NHS Continuing Care is funding provided by the NHS for people in full time care

NHS Continuing Healthcare is also known as ‘Continuing Care’ or ‘Fully Funded NHS Care’.

Over the last 3-4 years we have been contacted by over 1,000 families needing help navigating the Continuing Healthcare funding system. Many have never been told about NHS funding by the health and social care authorities, and yet the NHS has a duty to promote this funding.

What does NHS Continuing Care cover?

It covers 100% of care fees for people who need full-time care primarily for health reasons, i.e. they have a Primary Health Need. It’s available whether you’re in a care home, in your own home, in a hospice or somewhere else.

If you’re in a care home, NHS Continuing Healthcare covers all care fees, including the costs of accommodation.

It doesn’t matter whether you’re in a residential home or a nursing home, the same rules apply: It’s about your health needs first, not where you live or how much money you have.

The landmark Coughlan case, reinforced the difference between health needs and social care needs.

Should you be assessed?

If you have healthcare needs and you need full-time care, you should have a Continuing Healthcare assessment. NHS guidelines and the Standing Rules Regulations require local Clinical Commissioning Groups (formerly Primary Care Trusts) to assess anyone who appears potentially eligible for Continuing Healthcare.

However, many people find that they are assessed first by the local authority, to test their financial means.

If your local authority does a means test before you’ve been assessed for NHS Continuing Care, it can put the local authority in a potential unlawful position. Why? Because your care needs could be beyond the local authority’s legal remit for providing care, and you could end up wrongly paying. A Continuing Healthcare assessment needs to be carried out to clarify who is actually responsible for paying.

Many people with health and nursing care needs are automatically means tested first, and end up paying, and yet families report there will often have been no assessment for Continuing Healthcare. It is this that has led to thousands of retrospective claims for Continuing Healthcare being made.

What is the ‘National Framework’?

Prior to 2007 each Health Authority had its own eligibility criteria for Continuing Healthcare. The result was a ‘postcode lottery’, great confusion and thousands of complaints to the Health Service Ombudsman.

In 2007 the Department of Health introduced a new ‘National Framework’ for England, with the aim of providing a consistent single assessment process for everyone. Most (but not all) of these National Framework guidelines apply to Wales as well.

“‘NHS continuing healthcare means a package of ongoing care that is arranged and funded solely by the NHS where the individual has been found to have a ‘primary health need’… Such care is provided to an individual aged 18 or over to meet needs that have arisen as a result of disability, accident or illness. …Eligibility for NHS continuing healthcare places no limits on the settings in which the package of support can be offered or on the type of service delivery.”

How to get through a Continuing Healthcare assessment

Care To Be Different was set up by The Founder, after she won a tortuous four-year battle to secure Continuing Healthcare funding for both of her parents. Since then she has had personal contact with over 900 families needing help understanding Continuing Healthcare. Almost all of those families had either not been told about NHS funding when a relative first needed nursing care and/or faced obstacles in the assessment process.

How To Get The NHS To Pay For Care, to help families get through Continuing Healthcare assessments and argue their case. It shows you what to do – and what not to do – and it can save you losing everything in care fees. It’s easy to follow and cuts through the confusion to show you step by step how things work.

“We were so grateful to find a clear and helpful guide to the process at a time when my mum was so vulnerable. It gave our family the confidence to successfully fight for NHS funding. The NHS should be ashamed of the way families/carers are treated: incorrect records, withholding information, conflicting information… I felt I must write to thank you for the information.” Rachel

“We have heard today that my mother-in-law is to receive NHS Continuing Care funding. We could not have done it without your book and website. Thank you so much.”Ian Johnson

417 Comments

Hello. We care for a person who is in receipt of NHS Continuing Healthcare. We were recently informed that the CCG no longer considers her to be eligible for CHC funding and that they will no longer conduct CHC assessments or reviews. They say that this is because the person used to be in a long stay institution and is therefore a ‘category X’ patient.

They say they will continue to fund this person as a Category X patient but not CHC funding.
We are concerned that this may negate our friend’s healthcare needs. I suggested that everyone is entitled to CHC assessment and was told that that was wrong. Their view is that such people are not entitled to be assessed for NHS Continuing Healthcare. Is this correct?

I’m an American married to a British citizen, so I’m trying to read up and understand all the laws in play here. Basically, my wife’s 78-year-old father had a stroke around 15 years ago and was placed in a West Sussex nursing facility shortly afterward. He cannot walk and has difficulty sitting up for long. He has no use of his right hand and very limited use of his left hand. He can no longer speak. In short, he cannot care for himself at all. He had a very modest income before his stroke and I believe his only assets were a pension and the family home, where my mother-in-law and wife still live. The home cannot be sold because they live there even though it is solely in his name. However, I have recently found out that my mother-in-law pays HALF of her small monthly salary as a supermarket cashier on her husband’s care and has done so for 15 years. From the little bit of reading I’ve done, that should not be happening. Can she just stop as she should not be using her money to pay for his medical care at all? Does there half to be an assessment? I want to this hardship to end for her immediately.

Does anyone know how long the local dispute stage should take? So far it has been just over a year for both of my Grandparents and we are still waiting for the local appeal. We had an informal local meetings last summer where we presented evidence of their needs but they just stated ‘we will agree to disagree’!. We have contacted the local authority several times and have just been told they will be in touch when they are ready and can assemble a panel! It seems as though they can take as long as they like and in the meantime my Grandparents have had to spend their life savings on care when they both have severe illnesses.

I submitted an appeal on behalf of my mother, who has since died, in July 2016. The most recebt response (December 2017) says “Due to the current case load and the Nurse’s staffing levels within the team there is currently a waiting list for cases. Therefore the appeals team are unable to provide you with a timescale for the completion of this”.
The cynical side of me says that this is merely a ploy to delay appeals in the hope that people simply give up and go away.
I intend to persevere and would also like to hear other peoples’ views on this.

A very useful website and has helped me find further help on the issue of NHS fully funded care.
I would note one point, the reference to para 33 of the National Framework document on the “but still paying for social care” webpage seems to be out of date as this document is now revision 2012. The wording of paras 33 and 34 have changed and the reference to ALL social care and nursing care ie “the NHS is responsible for providing ALL of that individual’s assessed health AND SOCIAL CARE needs”is no longer present. It may be that this changes the interpretation of how funding is arrived at, at this moment I am unsure. However I have a meeting with social services and a relative who has advanced MS and has been reviewed as needing 24/7 nursing care in a care home. We are still invoiced by the local council for a significant contribution to the care but it is unclear how the figures are arrived at so enquiries are in progress.
Perhaps this page needs to be reviewed to confirm it is still relevant?

Thanks for your kind feedback on the website Roger. Regarding your question, the 2012 National Framework still contains those words: “Where an individual has a primary health need and is therefore eligible for NHS continuing healthcare, the NHS is responsible for providing all of that individual’s assessed health and social care needs – including accommodation, if that is part of the overall need.” So the NHS must still pay for all social care as well as healthcare/nursing care when a person receives full NHS Continuing Healthcare funding. Link to 2012 National Framework: https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/213137/National-Framework-for-NHS-CHC-NHS-FNC-Nov-2012.pdf

My dad has vascular dementia, prostate cancer, various skin cancer, high blood pressure, ademema , high risk of falls, asopcas dyxphrasa trouble swallowing. Doubly incontinent. We have done two NHS Continuing Healthcare forms failed both said he doesn’t qualify. As he’s not aggressive anymore as he’s takes medication. His other issues has been manager i.e. carers come in 4x away. He has one sit. They say he’s does not qualify. Dad has to pay towards his care. After reading this on here my dad seems to qualify, why doesn’t he? Also continue chest infection. Can you help. Please.

My father has been in hospital for several weeks following a period of time in ICU after an infection in his brain and chest. The consultant has now said he no longer needs a hospital bed but would need care elsewhere before going home, to enable him to be mentally and physically ready for home and suggested a residential / nursing home. Despite this the social worker is trying to get him to go home with a package of care (four carers coming in per day). We feel that this is not acceptable as he has several health conditions and in particular has serious edema caused by acute venous insufficiency meaning currently his legs are massively swollen and large and he can not get himself in to bed. He is also a risk of falling. (he has fallen often before his legs became so large) He has been advised to spend periods of time in bed with his legs elevated. In addition to this he has COPD and angina. The social worker said he is not eligible for a place in a home after some sort of financial assessment but he could have respite care for two weeks if my father pays £97 per week and we also pay a top up fee. The social worker said that even though the consultant said he needs to go elsewhere first that they think he is fine to go home! A week after agreeing to the respite as a starting point they still have not found him a place and ignoring me most of the time! My father is happy to go to a care home but is unhappy in hospital and running out of patience which is what I feel they are hoping for. Any advice appreciated.

Hi – we have just started the process for a care package for my Mum, who still lives at home with my Dad but has dementia and has recently started to become aggressive. The social worker agreed that this was a priority case and is arranging for a weekly visit by a support worker from the Dementia Team and looking into day care centres to give my Dad some respite. I did ask at the assessment if we should start the application for NHS Continuing Healthcare but was told that this was not applicable at this stage as it was not really health-related. They have now sent through a letter asking my dad to complete a financial assessment. Do we have to complete this assessment or can we say that we would rather go down the Continuing Healthcare route. I am concerned that if we do not complete the financial assessment they will halt the process that is due to commence regarding the care?

Thank you, another thing anyone ever had a DoLS filled out by the LA as some one said to me watch out as they some times forget to put things down intentionally or unintentionally what I wanted to know was what to watch out for

We just received letter dated Nov 20 that my dad does not have a primary health need & does not meet criteria for NHS Continuing Healthcare. He has been in a care home since Nov 2016. He was admitted to care home after one month in hospital through Fast Track End of life care pathway with poor prognosis.
They say his condition has improved he is stable & does not require nursing intervention. They are asking for him to stay at current care home it will be cost of approx £4000 a month (NHS will pay £156 a week). My mum does not have these funds & neither do us as family.
My mum does not know about this letter because she herself is in hospital & we have been taking care of her mail. We do not want to tell her because the stress will slow her recovery.
My dad was admitted to care home last year with pneumonia, bowl obstruction & infection. Currently he remains in care with none of the above symptoms however he still is non-ambulatory, needs turning every 4 hours. Need help eating, taking meds, Is incontinent, is disoriented & a fall risk. The report says he does not have dementia but to us he shows all the symptoms of it. He does not recognize us, has no short term memory.
We live out of the country & are trying to navigate this process internationally. Could you let us know what will the next process be? If we cannot pay care home bill, will they send my dad back home? My mum is currently in hospital too & nobody is home to take care of him. All of us children live long distance away. Even when my mum returns home she cannot take care of him. She is old, ill and weak herself. Could they move him to another home that is less expensive & does cover his care? Who will pay for this?
We are at our wits end because my dad will be so upset to get moved & his funding runs out in just a couple of weeks. This is all going to happen over the holiday time when many of the admin staff will be unavailable to talk to. We are not sure who to call for help. Do we trust the NHS? We feel the assessment was completed without input from our family & is slanted towards them dumping him.. Do we call the care home who have already sent their invoice for December? Do we call a solicitor? We cannot afford one but we don’t know what we are doing here and need help.
Please advise

I will help your mum with pleasure if I can. Please REMEMBER that a well managed need is STILL a need. For example – a patient has a need such as an unsafe swallow and therefore cannot be fed food or liquids orally, the DR inserts a PEG, feeding tube meaning the patient can now receive nourishment and fluids therefore the need is now managed. However, if the feeding tube was removed the patient would still have the need thus the score cannot be reduced for a well managed need. You can easily challenge this yourself and do not need to pay anyone. Can you make friends with me on facebook and we can message each other so I can send you the information you need via messenger or email . My name is Irene Shaw East Retford

Hi,
After a 7 week stay in hospital for my father whilst we battled with the CCG to get my father home as the CCG were adamant that they would only recommend Continuing Healthcare funding a nursing home because my father was too ‘high risk’. Anyway, after throwing every bit of info I could find at them they agreed to send him home.
My query is in two parts if you don’t mind answering please:
1. They have said he has been assessed as needing 24 hour care – but offered a care package of 4 day visits & 4 nights of care sitters – we can manage days but the 3 nights are very difficult. How can I get them to give us the 7 nights without being pushed into placing him in a nursing home?
2. Does Continuing Healthcare fund incontinence products? My father is doubly incontinent, diabetic and prone to urine infections. But the incontinence team said they would only supply 4 products over a 24 hour period. Can I go to the Continuing Healthcare team and request more? Dad goes through 4 in a couple of hours. What is the situation with products needed by the patient?

With regards to incontinence pads and stretch pants, the incontinence nurse should visit and assess your father, the NHS Home Delivery Service will deliver a 3 month supply. As far as I know Continuing Healthcare does not include incontinence products, your
local District Nurses should be involved (catheterisation if required).

It is a decision by your local CCG what funding is required, I have never heard of full day and night cover, its a compromise between the two covers, your district nursing team usually submits to the local CCG a care package for the patient.

I would strongly urge you to contact your local GP, who can make a referral to the local district nursing team, if you have any misgivings about the conduct of the incontinence team, I would advise you to complain to your
local community health, who have the authority to investigate the local district nursing team.
The NHS Home Delivery Service can be browsed by going to the NHS Supply Chain at http://www.supplychain.nhs.uk
I would also contact your local Trust customer services, all avenues should be explored.

an NHS continence service – which is staffed by specialist nurses, sometimes called continence advisers
your GP – who may refer you to a continence adviser or your local district nurse

You may be able to book an appointment at an NHS continence service without a referral from your GP.

Once you’ve been assessed, the healthcare professionals treating you will say which incontinence products are available on the NHS. Your local CCG may have criteria that you need to meet – for example, products may only be available for people with severe or long-term incontinence and you may be limited to a certain number of products per day.

If you request more incontinence products, you will be reassessed to check if this is necessary, and if so more products should be offered.

If this doesn’t happen, or if you have any concerns, tell the healthcare professionals treating you. You can also seek advice from the Patient Advice and Liaison Service (PALS).
Continence clinics

There are over 260 NHS continence clinics in the UK that have specialist teams providing support and medical advice for people with bowel or bladder incontinence. The clinics can be based in a hospital or in the community, such as in a health centre.

You can phone some continence clinics directly to make an appointment but others will require you to be referred by your GP. To find out where your nearest NHS continence service is call your local hospital.

On your first visit, a continence adviser, usually a nurse who specialises in bowel and bladder problems, will assess you and explain your incontinence treatment options.

Thank you so much for your advice. I contacted the incontinence service and despite medical evidence of my dad needing 4/5 changes a night and similar during the day (the stay in hospital provided the evidence) apparently NHS Continuing Healthcare is irrelevant as this is just dealt with by district nurse incontinence team & the local authority set the limit. So it is dependent on what the local authority have allocated.

I have got nowhere even though my father is prone to uti’s and needs support.

Hi everyone, I have got a lot out of your questions and answers already. My mum is in hospital on her third week. Doctors have found her to be “without capacity” from Monday this week. She is suffering from Delirium and very confused, hallucinations. My brother and I would like to get mum home and care for her there, but in her present condition realistic I don’t think is possible. The Doc and OT have said that the maximum care package (4 visits per day) plus our visits would not be enough as they believe she can’t be left on her own and would need 24/7. She has been aggressive a couple of times, refusing food and tablets. Invading other patients space. After reading on your website about Continuing Healthcare (CHC), I asked the Social Worker if my mum needs a CHC assessment. He replied “CHC does not apply for short term illness”. I have read a lot about this but I have not found any reference to CHC either being for long-term or not for short-term. He also said that the hospital wouldn’t complete a CHC assessment unless the patient was close to the end. Is that true. Thanks for your help. Karen

Dear Karen The first advice I would give you is beware of Social Workers and HCPs who will lie to you or give you mis-information based on ignorance of NHS Continuing Healthcare (CHC). I am not sure but I think regarding long term/short term comment this makes no sense as NHS CHC is reviewed initially after first 3 months then yearly so I believe your mum is entitled to an assessment. Further she would be able to stay at home with carer staff 24 hours daily if she is eligible.
My advice is insist on an assessment do your home work before the meeting with NHS CHC assessor Social Worker and Nurse download the Decision Support Tool.
Keep strong fight for what your mum is entitled to do not give up and do not believe what officials tell you. Best wishes Irene

Individuals may request an assessment for NHS Continuing Healthcare. In these circumstances, the organisation receiving the request should make the appropriate arrangements for a Checklist to be completed.
The Checklist is based on the Decision Support Tool (DST) for NHS Continuing Healthcare.
I have personal experience of Social Workers and find many of them to be incompetent and do not have the knowledge
regarding NHS CHC.
I would report that Social Worker for being incompetent.

Karen
Everybody, before leaving hospital, has to be considered for Continuing Healthcare (CHC), and a Checklist and then, if necessary Decision Support Tool (DST) done. If it’s not been offered, then request it and say she has a right to have it and she cannot leave hospital until it’s been done.

Hi Karen
If you don’t have any joy with the hospital, you can always contact your mum’s local CCG direct to request an assessment. That’s what I did when the social worker and GP surgery couldn’t agree whose job it was to do a referral. If you search online for ‘******** CCG’ (or whatever area your mum lives in), you should be able to find a phone number and email address. I emailed the relevant CCG to request a Checklist assessment for NHS Continuing Healthcare, explaining my son’s circumstances, and they made an appointment to do an assessment. I agree with Irene that it’s very important to study the Decision Support Tool and familiarise yourself with the criteria so you are well equipped to argue your case.

A technical question – we had a review and Asked the assessor how long before we hear and he said a few weeks. I said I thought it was within 28 days and he said no this is a revue it doesn’t come under the 28 day rule. So I said back, you can call this what you like but you as an assessor have come here with an assessment form (Decision Support Tool) to assess my wife’s present needs – an assessment by any other name is still an assessment- “review “a formal assessment of something with the intention of instituting change if necessary”; an “assessment “the action of assessing someone or something”. I said show me in the National Framework where it says a review does not come under the 28 day rule .Am I right or am I wrong? Many thanks Barry

Hi Barry
I don’t think there is a stated timeline as in the first assessment see this from AGE UK documenthttps://www.ageuk.org.uk/globalassets/age-uk/documents/factsheets/fs20_nhs_continuing_healthcare_and_nhs-funded_nursing_care_fcs.pdf
Regular reviews are part of the NHS CHC process and you have the right to be represented by a person of your choice. If you were considered for NHS Continuing Healthcare(CHC) and the NHS subsequently provides or funds any part of your care package, your case review should take place no later than three months after the initial eligibility decision and then at least annually. The Multidisciplinary Team (MDT) makingthe original recommendation may specify a different timing or your first review. The focus should be on whether your needs have changed and consequently whether your care plan needs revising and not on whether you remain eligible for NHS CHC. Any decision to remove eligibility should be undertaken jointly by the CCG and relevant local authority and involve completion of the Decision Support Tool. They should use their local disputes procedure to resolve disagreements between them about your eligibility. During that time the CCG must continue to fully fund your care. If the CCG and local authority agree you are no longer eligible, the CCG should inform you in writing, with their reasoning, and explain your right to request a review of their decision. A month’s notice of a change of funding responsibility would be reasonablehttps://www.england.nhs.uk/wp-content/uploads/2015/04/qck-ref-guid-chc-nat-framwrk.pdf

Having gone almost a year before our relative was reviewed – without Social Services present – the Commissioning Support Unit was amazed that we wanted the outcome (12 months fully funded NHS Continuing Healthcare) confirmed in writing. Don’t get left without written proof of the funding decision and its date!

And yet Barry, we were told that there is no difference between reviews and assessments.
Another told us that reviews could be undertaken by a single assessor with the view to a full Multidisciplinary Team (MDT) assessment if they discovered grounds to attempt removal of funding….. Or that a single reviewer could make an assessment that NHS Continuing Healthcare (CHC) funding should begin. All very logical, that part.
Yet another instance was the challenging of the use of a Decision Support Tool (DST) by a single reviewer, so that locally at least, they had to create a separate ‘Review Form’….. Because it is only possible for a fully formed MDT to complete a DST and complete it with an agreed recommendation; which ‘agreement’ could logically, never be done in legal compliance, by a single assessor/reviewer……
It is like the weirdest world ever imagined, working with NHS CHC people…..

Wonder if you may be able to advise. After four months stay in hospital where my dear Dad had a major operation and it was found that he had bowel cancer, also he had a number of serious infections, it was agreed that he was eligible for continuing health care to fund 24 hour care. His dementia has got significantly worse during the last four months as he also suffers from delirium and previously a kind loving gentleman, he is more confused and can be aggressive, a number of times refusing treatment, pulling his catheter out and sometimes pulling his stoma bag off. Whilst he was in hospital, there was a need for someone to always be with him to keep him safe and when the family had to go home then the junior nurses had to stay with him during the day and night. He moved into a lovely nursing home last Wednesday and now they are saying that the hospital didn’t tell them that the hospital didn’t tell him the full story, as they said over the last week he has needed one on one care which is not the case, as it has been a lot longer than that.

The nursing home is now asking us to sign a contract and asking us to pay ‘top up’ fees as CCG have only paid up to £950 per week but then their fees are £1400 per week. They are asking us to pay £450 per week top up fees. Should this be covered via NHS Continuing Healthcare (CHC)? Also, should CHC pay for the one on one care too since they are finding it difficult to cope with my Dad’s severe dementia?

Hello Amanda
Did you and your family attend the assessment that decides if NHS Continuing Healthcare (CHC) will be awarded? Once it has been awarded then it is there for 3 months until it is reviewed by the CCG. The Nursing home cannot change the decision of the CCG.
Best Wishes
Irene

Many thanks for responding so quickly. We have just been confirmed that CCG are now paying for the one to one care that my Dad needs, as well as the 24 hour nursing care. The original report did reflect that he was not safe on his own which was why he always needed someone to stay with him, also that he needed someone to stay awake during the night so that they can keep an eye on him.

I have also received an explanation from the care home ith regards the hospitality contract, which clearly refers to the hospitality services as I responded to them that we do not wish to receive the hospitality services, in particular as the following would not apply to my Dad e.g. visitors meals; hairdressing; beauty treatments; newspapers; taxis; dry cleaning; physiotherapy over and above any physiotherapy agreed in the care contract; chiropody/optical and dental consultations (where appropriate) and telephone calls, therefore would this suggest that we would not need to sign the contract?

I also understood from the contract that clearly states that the care contract with CCG is a separate contract and includes the following:

• Care services provided for under the Care Contract
• Equipment required for the provision of care
• The provision of personal accommodation?

I have now received a response from the care home explaining that the hospitality contract is for the top up of £450 to be paid by the family, in order to cover the shortfall in fees, as CCG have only agreed to pay up to a certain amount. The contract is in fact, not for any of the hospitality items but just for the room fees. This appears to be confusing, and I want to ensure that we haven’t shot ourselves in the foot so to speak. whereby we feel obligated to pay the fees because he is in the nursing homes, when maybe we shouldn’t particularly, if there was to have repercussions later when my Dad’s continuing health care is reviewed in three months. Should we be charged for this or not?

Apologies but I am deaf therefore will not be able to access to BBC radio 4 interview. Does this mean that the NHS continuing healthcare should not be topped up? Therefore, we should not be paying the top up fees even though the price agreed with CCG maybe below the normal weekly charge?
Kind Regards
Amanda

Angela Sherman1 year ago

Correct, Amanda – National Framework pages 117-118 makes it clear that NHS legislation does not permit top ups with NHS Continuing Healthcare, only with local authority social care.

Hi I have a Continuing Healthcare (CHC) review coming up soon and my wife is at the end stages of Alzheimers and is registered as “end of life care”. What I was wanting to know – would I be better off not telling them and go through the normal assessment or would I be better off telling them that she is” end of life” registered, and I presume they would Fast Track but is that a guarantee that I would continue with funding? Many Thanks. Barry

Hi Barry
I am so sorry to hear about your wife. There is nothing you need to do regarding funding because your mum will be fast-tracked automatically following her being assessed for end of life care.
I hope she is comfortable and settled. Best wishes Irene

Don’t be surprised if they tell you it’s only available for a few weeks, or that it doesn’t cover all costs, or that they ‘don’t do’ Fast Track – or other such excuses.

barry1 year ago

How can they say that its not fair what would I say if they do say that ?

IRENE SHAW1 year ago

Barry I think Angela is just trying to warn you that some CCG’s will try to avoid funding but the National Framework is clear when a patient has been fast tracked and in receipt of end of life care just refer them to the Framework. Regards Irene

Hi I have looked up the Fast Track in the National Framework and they keep on about a “Fast Track Tool”. Do i or does a doctor have to fill this out be available for the assessment? It just goes on and on many thanks for your time and help.
Barry

Hi Barry, the 4 characteristics are Nature, Intensity, Complexity and Unpredictability. the following might help you in your understanding:
“It is also essential that any interpretation of the descriptor be consistent with the NHS Ombudsman’s findings in the Pointon complaint (Health Service Commissioner, 2004). In that case she concluded that Mr Pointon was eligible for NHS Continuing Healthcare (CHC) on the basis of his challenging behaviour – which was managed in the family home by his wife and a rota of part-time care assistants. Mr Pointon suffered from the advanced stage of dementia characterised by mood changes and behavioural disturbance, although by the time of the decision the severe behavioural problems, which had characterised his illness (during the earlier stage of dementia) had diminished. The family assert that with review of the above the 2nd Decision Support Tool are wrong to score JH’s behaviour needs lower under this domain based on the care staff stating that she is now more compliant. The above similar to the framework makes clear that just because a need appears to be well managed now that does mean the need does not exist should the management of that need be removed.” Page 9 NHS Funding for Continuing Care in England the revised (2009) Guidance Luke Clements Solicitor and Professor, Cardiff Law School Cardiff University.
The NATURE of this need-
JH had been diagnosed with lacking mental capacity this infers that her behaviour would remain inconsistent. It was difficult for all to read the non-verbal cues JH displayed making management of this need extremely difficult. JH was unable to display behaviours consistent with what she wanted to convey. JH frequently patted her chest when she wanted to communicate something but she used this behaviour repeatedly for a variety of reasons. Family and staff even had they possessed heightened non-verbal communication skills would have never been able to read the cues JH displayed accurately. The overall effect for JH must have been at least frustrating and at worst terrifying that she could not use appropriate behaviours to communicate her need(s).
The INTENSITY of this need-
JH possessed behaviours that placed her at risk in many areas.
-Refusing care
-Refusing administration of food and medicines via PEG
-Refusing administration of nebulised/inhaled medicines
-Refusing physiotherapy causing worsening contraction of limbs and pain suffered
-Believing she could walk and when she needed to use the toilet trying to climb out of bed, this had happened previously in hospital as a result of agitation.
JH lacked mental capacity therefore could not understand that her behaviours placed her at risk. Sustained care was required as Care staff and family had to wait for any negative behaviour to pass in order for them to attempt to administer to JH what she required.
The COMPLEXITY of this need-
The abnormal behaviours that JH displayed and that placed her at risk arose as a result of the brain injury she sustained as a result of her stroke that led to mental incapacity. Further prior to the stroke JH suffered she had been showing early signs of dementia with family increasingly observing confusion and forgetfulness.
The UNPREDICTABILITY of this need-
JH as her medical consultant had stated continued to suffer periods of either agitation, being alert or being severely fatigued and sleepy. These episodes were unpredictable and inconsistent. As a result JH required 24 hour monitoring and bed rails were in place to try to prevent her falling out of bed during periods of alertness and/or agitation/anxiety. Care staff and family have all raised concerns with regards to JH unpredictable compliancy whereby when failing to comply JH had to be left until her behaviour calmed down. Any attempt to reassure JH and persuade JH to be compliant failed. It is recognised the more severe the brain injury, the more pronounced the long-term effects are likely to be. Survivors of more severe brain injury are likely to have complex long-term problems affecting their personality, their relationships and their ability to lead an independent life. Even with good rehabilitation, support and help in the community, survivors and their families are likely to face uncertain and challenging futures.
The DST user notes state that “a person may be considered eligible for NHS CHC funding on the grounds of unpredictability if they have need for monitoring, supervision or investigations that is not of a nature or extent that a local authority can provide.” The family assert that we believe we have evidenced that JH’s need for monitoring and supervision under this domain is clearly beyond the legal remit of the Local Authority.
Best Wishes Irene

barry1 year ago

Hi Irene, thank you so much, that is what i was looking for. You have been so helpful in making it clear, i cant thank you enough.

If your wife is registered for “end of life care”, was she not Fast Tracked in the beginning? It should be automatic that your local CCG will continue to fund your wife’s needs. The Eligibility Criteria for NHS Continuing Healthcare funding will need to be met, as you sadly state your wife is reaching end stage and I see no reason why funding would be withdrawn.

Hi My wife has had Alzheimers since 2008 only in Feb 2017 was she registered as end of life. We already had the funding but there is a review coming up in early Nov and the way CHC is going they will try every trick in the book to take the funding away, as so many others have said. Many thanks for your help.

I have been thinking about direct payments for my sons care but have been told by my sons day care manager and social worker that if I were to go that route my son would not get the level of care provided that he does at the moment, also that another client who did it lost quite a lot of care. Is this possible please? Also if I did decide to go this route would we be able to use the same agencies to provide his care that we are using at the moment? many thanks

My mother is in a residential home with advanced dementia, she was diagnosed with vascular dementia over 8 years ago. After suffering a virus recently I feel she seems to be in a much worse state now and unlikely to get back to how she was. Having some experience of sitting through a Continuing Health Care assessment supporting another relative, I feel my mother may now qualify for this funding. I wondered how to get the process started and who to consult to get the ball rolling. Any suggestions would be greatly appreciated.

I am sorry to hear about your mum, do remember that if your Mum is deteriorating you can request another NHS Continuing Healthcare (CHC) assessment as her condition changes.
These 2 websites should be able to help you with benefits/monies your mum is entitled tohttp://www.ageuk.org.uk/http://www.caroncares.co.uk/
Best wishes x

I would be grateful for any response to this question, please. My mother came out of hospital just over three years ago and was assessed as requiring nursing care, but not eligible for Continuing Healthcare (CHC). She has now been at the nursing home since that point and is self funded. She received the nursing care contribution at the lower level. Would I be correct in thinking that for the first 12 weeks of her care, her house and savings should have been disregarded and her care should have been paid for? If so, can this money be paid back to her to put towards her future care? Thank you.

Hello everyone I just wanted to let you all know that following a long hard stressful fight we have won our case for fully funded NHS Continuing Healthcare (CHC) at Independent Review Panel (IRP). I want to thank Angela for her website and all those who contribute as the information has been invaluable. Our Mum died whilst we were appealing which added to the distress caused by it being removed at the first 3 month review. The CCG knew full well that our mum was entitled to CHC and deliberately withdrew it hoping we would not have the energy to appeal. I believe that where it is shown at appeal that a CCG does not have any rationale for removing funding they should be seriously fined and made to pay compensation to the family for all the added stress and distress they have caused as a result of malicious removal of funding. I hope all of you out there currently appealing find success.

My uncle went into a care home 6 weeks ago after a stay in hospital. He was self funding. He took a turn for the worse 3 weeks ago & last Thursday a Fast Track Assessment was undertaken by the GP & we were informed on Friday that it had been approved. The GP believes he only has a few days left.

My sister-in-law received the call re the approval from the Joint Care Team at our local Adult Social Services. She was told that only £462 per week would be paid (his fees are £792 pw) and that, should we wish him to stay in this care home we would need to top up the rest from his funds. I rang them today to query why the full fees weren’t going to be paid & was told that Leeds NHS have a ceiling amount they will pay. I was told I could challenge the decision with Leeds CCG. I was also told to contact DWP as his Attendance Allowance will cease now he has been approved Continuing Healthcare (CHC).

Before I ring the CCG can I ask – 1) I understand from the NHS website that they say ‘ Your CCG should work collaboratively with you and consider your views when agreeing your care and support package and the setting where it will be provided. However, they can also take other factors, such as the cost and value for money of different options, into account’ and ‘If there is evidence that a move is likely to have a significantly detrimental effect on your relative’s health or wellbeing, you should discuss this with the CCG who will take your concerns into account when considering the most appropriate arrangements’ – but would they really argue this when someone is within days of dying? 2) Ask us to pay ‘top up’ fees when it goes against the National Framework? & 3) Should we need to pay these fees to keep him in his current bed until his demise, surely Attendance Allowance should continue to be paid to go towards his care? Any advice before I ring the CCG is gratefully appreciated. Angie.

My mother had a full assessment in November 2015 following 3 months in hospital after suffering a stroke. She was awarded full nursing care funding and was transferred to a local nursing home. The nursing home received her with a number of medical problems including pressure sores, breathing problems and GDH Positive as she contracted Clostridium Difficile in hospital. The care she has received has been excellent. The pressure sores have been cured and the effects of other medical problems have diminished because of good nursing and management. She is PEG fed which was problematic in hospital with the site getting infected, but the nursing home has coped with it brilliantly and no infections have occurred since being there. The upshot of all this is that at the recent review by the Continuing Healthcare Nurse on behalf of the CCG she was deemed to no longer need funding (other than £150 per week) as she has not satisfied the criteria because she doesn’t have the same level of medical problems. My argument is that she still needs the same amount of nursing to ensure that these problems do not recur. Has anybody out there got any experience of asking for the decision to be reviewed, and if so is it worth me trying? Any information or advice will be much appreciated. Mike

Hi,
My Grandad fell over in his house in early December and broke his hip. He was admitted into hospital and developed major confusion which we initially thought was due to the after effects of the anaesthetics. He couldn’t recognise us at first, didn’t know where he was or even his own age ,date of birth, where he lived etc. He didn’t recognise his wife when we bought her to visit a few days later, and she didn’t recognise him because she has advanced Dementia. This confusion has continued and he has now been diagnosed with Alzheimer’s. Along with the confusion he has become very aggressive due to this illness and attacks the care staff regularly punching and kicking out at them. We asked for a CHC assessment for him and was told his behaviour would be rated as low to moderate due to his lack of cognition. I argued that his behaviour is of a severe nature and has resulted in injuries to staff with one requiring treatment in A&E. Still the assessor said this should be in the cognition domain. He had full mobility before he broke his hip but has no mobility now due to that fact that they stopped his Physio treatment due to his behaviour. He is now bed bound. We was told that he didn’t meet CHC requirements and have appealed this decision with a meeting in March. Now the hospital want him discharged to a care home and this is to be self funded, but on contacting nursing homes in the area none are prepared to take him due to his behaviour. Therefore they are now looking into homes further away and very costly. We are not sure what our next step should be because the appeal isn’t until March and they want him discharged asap?
We have also got the same kind of issue with my Nan who has advanced dementia, as she required respite care when my Grandad went into hospital. She has been physically aggressive to residents and carers, slapping them and punching them, so the care home told us they couldn’t cope. They recommended a home with a secure dementia unit. So my Nan moved to this home but after 2 weeks they told us they couldn’t cope either because she was attacking staff,residents and property. We had to take her out and move in with her 24/7 until we could find somewhere that could meet her needs. We then had a CHC assessment and we felt that my Nans behaviour was a Priority. The lady from the CHC laughed and said she has been assessing for 9 years and has never given a priority. I asked how her behaviour could be worse and she said that it’s not as though she is a 20 stone man with a knife! She marked her as a low to moderate!! She was very rude, arrogant and patronising. She ended the assessment saying that she didn’t meet the requirements and that we will have to agree to disagree! My Nan got an infection a few days later and is now in hospital. The ambulance staff had to restrain her because she was hitting out, screaming and shouting. Since she was admitted the consultant has told us she has hit the staff and is throwing objects around the ward and screaming at everyone. They have told us she needs 24/7 one to one nursing care as she is likely to now have recurring infections. We can’t understand how the CHC assessor can say that she hasn’t got a Primary Healthcare need?!
For both of these cases we feel we are getting nowhere with the CHC assessments, it’s took all of our energies and no one seems to listen. Who should be responsible for the payment of care when they are both discharged from hospital and while we are waiting for the appeal?
We would be most grateful for your views on this.
Thank You

My mother has received ‘Attendance Allowance’ for several years. She is terminally ill and started to receive CHC funding about 5 months ago. She lives at home and has 24 hour care paid for under CHC. My question is :- Is she still entitled to receive ‘Attendance Allowance’? Many thanks!

Hi, the husband of a friend of mine was moved from hospital to a care home. He had applied for Continuing Healthcare (CHC) and had it turned down in Oct 2016. He sadly died (bowel cancer) on 27 Nov 2016. He had been in the care home for less than a month. The Council have sent an invoice to his widow (to the Exors of his Estate), less than 4 weeks after his death, for the 27 days he was in the care home. The CHC decision would have been appealed if he hadn’t died suddenly. There is no Estate and his widow is not in a position to pay this debt. Could we still appeal the CHC decision?

Christine – the CHC decision can still be appealed. A person’s death does not change this. Also, your friend (now widowed) should not have to pay the care bill out of her own money or her share of any money; it is only the funds of the person needing care that should be taken into account – and if there are none, then the local authority is responsible. Consider sending the bill to the Head of Adult Care at the local authority.

Hello, I have a slightly different question. As part of a care team for a man with many complex issues, fully funded by CHC for 2 to 1 care, cared for in his own home. Sadly, he has recently become quite ill and has been transferred back to hospital. His family have requested that we complete our shifts as normal but at his bedside, 2 carers 24/7 in attendance, but we have been instructed that if anyone questions who we are or why we are there to just say family, presumably because funding would cease. Some of us are very uncomfortable with the situation. Could you clarify if his funding would cease after a period of time please. There’s little indication that he will be able to return home in the foreseeable future.

Linda – funding should only cease if the care needs of the person being funded reduce to such an extent that they fall below the level of eligibility. Funding does not cease automatically; it must be properly reviewed.

I have a cousin who is 82 and has heart failure and a curved spine. Her mobility is getting worse day by and now I have to take her to the toilet day and night. She can’t dress or wash her self. The OT is coming out after 7 months .
What do I expect from the 1st visit? She is living with me as she was falling at home and has no family. Will she qualify for CHC?
I work and recently had to take 3 weeks off to give care 24/7, will I be able to claim any benefits to replace my salary of I give up work to look after her
Thank you in advance

sorry Nursing home! She basically has no dementia but gets delerium due to change in surroundings. many nurses doctors and friends will verify that. what i want to know is is she medically fit with smashed plated femur bone at 96 to be thrown out of hospital? can we ask or demand she stays longer. we can’t bring her home as she is bedridden due to broken leg. will she be entitled to CHC funding? She has had accident fall and broken femur which i guess will never heal at 96 years old. Its totally cruel as she lived on her own was mobile.

please help me. I am totally new to this . I have a 96 year old grandmother i am her only next of kin as my Mum her daughter died last year. I am disabled myself. ;3 weeks ago she fell at home and had open fracture to her femur bone they have operated and an OT phoned me and told me she would have to stay in hospital for 6 weeks, unable to weight bare. She has since had a chest infection which she has recovered from. Last week without informing me they had moved her during the night to another ward, a winter ward where she is not able to stay long. I chased the doctor who she is under; she told me she has to go into a nursing home, is beyond rehab, is unable to go to local hospital as she can’t rehab and go home they wont want her.!! She will never walk again and has dementia…..which she most definitely has not. A social worker has been informed and will be in touch….Christmas is cancelled again this year. Please advise me what i need to ask them to do? Continuing Healthcare assessment? Have a feeling first thing they will want to know is how much money has she got? She does not own a house. They have put restriction on her file not to treat anything or do any obs at all. Dr said she is medically stable to be moved. I went in tuesday and she was screaming in pain and had no morphine for a full day… they are dosing her with it 4 or more times a day to keep pain level down then she just sleeps most of the time. When moved no pain relief was given. please send me any advice you can…can they move her to nusing home without my permission with broken femur bone?

That sounds very distressing, Sandra. The only way to know whether your grandmother will receive Continuing Healthcare (CHC) funding is to get the assessment process started. Don’t answer any questions about money. The hospital must assess her for CHC before she is discharged from hospital. Also, she should not be discharged until: a) she is fit to be discharged; b) there is a care plan in place; and c) there is appropriate and safe ongoing care in place. Take a look at this: http://caretobedifferent.co.uk/nhs-continuing-healthcare-funding-28-useful-links/ Read the links under the section ‘Relative in hospital’ (23, 24 and 25). Start with no. 25. The hospital has a duty to assess your grandmother for CHC prior to discharge, and this is made very clear in the Care Act.

After 8 years with Dimentia my Grandmother was granted Continuing Healthcare funding 6 months ago – they have now just done a review and removed the funding! She has gotten worse in these 6 months and i just cannot understand how they can justify removing the funding if she was meeting criteria before and has deteriorated in the mean time?! My mother and I have appealed the decision for the last 3 years and still have never heard back from our first appeal so we really are at a loss as to where to go from here. The assessors are aware she has a house and they just seem keen to get her to self fund eventhough she is so very poorly now. Any advice would be really appreciated. Thanks in advance!

I’m still having terrible trouble with social services after being awarded Continuing Healthcare (CHC) . They refuse to update my care plan to include health needs as well as social care needs and refuse to include access to swimming and therapeutic activities which my spinal surgeon says will help my recovery from surgery. They say they are not obliged to change my care plan after the CHC award! I’d be grateful for advice as its exhausting and making me more unwell dealing with them. I’ve submitted formal complaint and I’m just about to send it to both ombudsman .

Sandra – if you’re now receiving Continuing Healthcare funding, it’s the NHS that is responsible for your care, rather than the local authority. The surgeon may be interested to know that you are being denied the therapy he/she has recommended. It sounds as though the NHS could be negligent in that respect – just based on what you’ve said.

I am trying to gather together medical and care records to support my appeal against the decision to deny my late mother’s funding. The local authority has refused access to social care records on the grounds that they are exempt from the Freedom of Information Act. Is there any way I can access these records?

Mel – if you have the authority to pursue the case on behalf of your late mother’s estate then it doesn’t sound right that you’re being denied access. If I’ve understood your situation correctly, you shouldn’t need to submit a Freedom of Information request – the evidence in support of your mother’s case should be made available.

We’re looking to take an action against Social Services (SS) for failing to safeguard the needs of a vulnerable adult. Relative was in a care home as a self funder and not assessed by Social Services for over 2 years. Once SS assessed him, they rated his needs as Critical, but did nothing further. They knew he clearly had mental and physical health needs, yet was self funding for many years, and receiving no input from SS “because he was a self funder”. After 4 years in care, I finally obtained Continuing Healthcare for him this year without the help of GP or SS. Does anyone know what legislation covered the safeguarding of vulnerable adults prior to The Care Act 2014? Does anyone know what standard the Local Authority, or others had to attain, to discharge this duty, and what evidence might support this.
Finally, did the duty extend to self funders?

I am appealing after being turned down for funding. My mother died in 2011 she was in a nursing home.The NHS will not look into the last two years of her life as the say there was no assessment done, is this correct?

Judith – if your mother was not assessed during the last two years of her life, then the NHS must absolutely look into that period of time (assuming you included that in your claim). That’s the whole point of the retrospective review process. You can also appeal the decision to deny funding. Make sure they send you all the review documentation, inducing the Needs Portrayal Document – so you can see exactly what they’ve done and what kind of information they’ve taken into account.

A friend pointed (should I say ‘signposted’..the buzzword of the day!) me towards this great site.
My 87 yr old mother is now in mid stages of Alzheimers. She was fleeced out of just over £1000 a year ago by cold callers selling her…anti cold calling devices. At that point my 2 sisters and I knew we had to put the POA into action and see about help with practical day to day stuff. Weeks passed into months but eventually we got mum memory tested and an appointment with a Psychiatrist in late July this year. The Dr wouldn’t actually tell me that mum had alzheimers, just that she had a form of dementia. We discovered it when a lady from an organisation linked to Social Services told us. We asked for practical advice on day to day stuff we could help mum with. We were told a home visit would be sorted out within a fortnight. A month passed and I started to chase it up. At the end of September I managed to contact mums newly appointed social worker who stated that they had 28 days to allocate the case…I told her politely that they were 9 days overdue then. She did a home visit but it was based on a ricky box Q and A with mum, I had to virtually drag her to her feet to look at mums housing situation. Nothing practical was forthcoming and mum fell at home last Wednesday, taken to hospital and seen to. After 4 hours she was ready for discharge but my sister argued the case stating that she could not look after herself and (as had occurred) her house had been burgled during the afternoon and was now unfit for habitation. They kept her in overnight, assessed her for release the next morning and again said she was OK, as she had a downstairs (outside) shared toilet. We went to the Hospital and spoke with the lady who assessed her who was naive to say the least. She accepted mum needed to stay put. I rang mums social worker who stated that she thought mum should be fine at home when hospital release her. I went a little ballistic and the upshot was that I’d look for a care home for a short term respite.
I then read this site.
I went back to the social worker and told her that I required her to commence whatever it took to have a CHC Assessment. She seemed a bit put out that I knew about this but agreed that she’d speak with staff at hospital and they could probably do the assessment there and then. I told her that we wished to be present and quoted the care act as well as CHC guidelines. This was last Friday. Mum is still in hospital, now in a proper ward and it seems that regardless of the CHC assessment, the LA and NHS are at least looking at where mum goes next as they now agree she needs 24/7 care.
It feels a slog…and ours is a simple enough case. I can only imagine what it must be like for some posters who are,sadly, in a far worse situation than us.
I doubt mum is eligible for CHC at this time, but they don’t know I think this and I’ll fight tooth and nail for what is right for our mother.
Thanks agin for a mine of great information.

I read this …. “During the first 12 weeks, if the care home costs more than the approved rate, and your relative has financial resources above the savings and capital threshold for care fees your relative will have to top up the fees during this time. ”

Does this mean that if the relative has more money than the savings limit of £23,250, that he will still have his full care home fees paid for the first 12 weeks, providing the cost is not above the council’s upper threshold. And if above, he will only have to pay the extra as a top-up. Or will he pay all care home fees for those first 12 weeks because he has savings above the limit?

Andy – I’m wondering if what you’re referring to is the 12-week property disregard. This is where a person’s house is disregarded in any means test for the first 12 weeks of permanent care. Does your relative own a house?

Hi, my profoundly disabled son lives in a care home (not nursing) and is currently funded by Social Services, with him contributing £400+ per month from his benefits. We are in the process of applying for NHS Continuing Healthcare on the grounds of his unpredictable aggressive outbursts – he has assaulted and injured fellow residents. He does not need nursing care. If he is awarded Continuing Healthcare (CHC), I would like to understand the impact on his benefits as I am afraid of opening a can of worms! He currently gets Disability Living Allowance (DLA) Mobility Component and Employment and Support Allowance (ESA). When he comes home to stay with the family for short periods he also gets DLA Care Component (Higher Rate) and I claim Carer’s Allowance (CA). Which of these benefits will he lose if he gets CHC? Will he still be able to claim DLA Care Component when he comes home? One of my concerns is that if he can no longer claim DLA for periods at home, I won’t be able to claim Carer’s Allowance, and my sporadic CA claims seem to be keeping my National Insurance credits going for the benefit of my future state pension. Having been a full time carer for over 20 years and been unable to find employment since my son moved into care, I am at risk of having a reduced pension.

Hi, my mother is in hospital at the moment she’s been there for 8 weeks after suffering a serious stroke leaving her unable to speak, bed bound, double incontinent, and being fed by a PEG, she also needs her mouth suctioned 4 times a day, she has had 2 previous strokes before. The social worker and hospital and medical staff say they doubt mom will ever walk again. She needs to be hoisted out off bed to sit in a tilt in space chair. We had a meeting today with the social worker who has referred mom for CHC funding, my mom has no savings but does own her own home but this is shared with my sister and her 15 year old daughter.

The hospital want to discharge mom as the say she is now medically fit, we have decided as her daughters we want her to come home, the hospital have provided the furniture for her room, i.e bed, hoist, tilt in space chair.

We are now very worried after reading all these terrible stories of CHC funding not being granted. I asked the ward sister today what was happening she informed me that mom was scored and an assessment will be carried out with us present.

As my sister lives with my mom she will be the main person looking after her. We have arranged for mom to be looked after the 3 days my sister works by a family friend, as the hospital have said mom needs 24 hour care.

What would happen next if CHC funding was refused? Could we say that we don’t want want her discharged as we cannot find for her care ourselves.

Sue – remember that your mum’s house is irrelevant when it comes to Continuing Healthcare. This should be based on her care needs only, not her money/assets. You mentioned that the war sister said you mum was “scored and an assessment will be carried out with us present.” Your mum shouldn’t be scored at all until the actual assessment meeting take place and with you present and involved. If any Continuing Healthcare scoring has taken place already (unless it was the Checklist) question this and ask for the relevant paperwork. Until the Continuing Healthcare funding decision is made, the NHS remains responsible for all care payments: http://caretobedifferent.co.uk/paying-for-care-between-hospital-discharge-and-funding-decision/. If funding is refused, and you disagree with that outcome, you can appeal. The hospital can only discharge her if she is fit to be discharged AND if there is ongoing care in place AND a proper care plan.

Hi, my son is CHC fully funded, he is assessed as needing 1-1 care +2-1 when in the community. We are constantly being told by his respite centre that he is not funded for either which has an impact on his being able to access the community. Our local authority has his CHC funding paid directly to them and argues that as they block book care they pay more than the NHS give for his care. Is this correct, and surely if he is assessed as needing this care he should be provided with it. If others are taken out into the community whilst in respite we feel he is being discriminatory treated.

Hi . My thanks also to those sharing their stories. Like tyla I also have an aunt with vascular dementia. A family member holds the Power of Attorney for her. She was admitted into hospital and safely discharged into a care home. When this happened we were told by health and social services that it was not possible for her to return home and that her home must be sold and she must be put into care. This, they said was in her best interests and we agreed.
At a later date Social Services told us that the decision to place her in a care home was made by the Power of Attorney. My question is did the Power of Attorney make the decision? Surely the very nature of best interests means you would go along with the directions of health and social services otherwise you are not carrying out the role of Power of Attorney properly.

Joanna – what you were told by the care authorities when your aunt was discharged from hospital was grossly inaccurate. Your aunt should have been assessed for Continuing Healthcare funding before being discharged – and no one should have told her to pay anything at that point, let alone sell her house. You could make a strong complaint about abuse of power if they claimed all this was in her ‘best interests’, and especially if they ignored power of attorney. We can’t tell you if the power of attorney made the decision – you’d need to ask that person within the family. Sadly people working in health and social care do not always give families the correct information, and many families report being given false information as a deliberate attempt to make the person needing care wrong pay for it themselves. A Best Interests meeting is something that is held when there is doubt about a person’s mental capacity to make a specific decision for themselves, and any such meeting must involve the family. You can read more about Best Interests meetings in the National Framework guidelines. You can read more about Mental Capacity Assessments here: http://caretobedifferent.co.uk/mental-capacity-assessments/

Afternoon all, thanks for sharing your concerns and stories. I have an aunt who has vascular dementia and as a result of this I sadly had to place her in nursing home as she was falling, walking the streets and leaving the cooker on etc. Because of her vascular dementia would she be entitled to Continuing Healthcare or any other help to pay for her care home fee which we are paying in full at the moment. She has a home but she doesn’t want me to sell it as she believes that one day she will return home to live, which sadly will not be possible. She used to get Attendance Allowance, but they have stopped this now as she is in a nursing home. Many thanks

Tyla – eligibility for Continuing Healthcare doesn’t depend on any specific diagnosis, dementia or otherwise. It depends instead on day-to-day care needs, whatever the cause of those needs. Your aunt should have been assessed for Continuing Healthcare funding when she first went into the care home. Be sure to get that process started as soon as you can: http://caretobedifferent.co.uk/just-started-applying-for-nhs-continuing-care/

Thank you for your reply. But what happens in a situation where a person is well financially able and also willing to pay the top up, and family members who could act as a third party, would be willing but are not able to? Many thanks for your help.

Hi Marion – a person cannot legally pay their own top up fees, even if they are able to financially; it has to be a third party that pays top-up fees. If the third parties cannot pay, they shouldn’t be forced to. Be sure to look at the five bullet points at the end of the article I perviously mentioned (see the link in my previous response).

My Father had been given CHC funding for a period of four months but this has now been taken away from him. He will now have to be self funding as he has more than the threshold amount in assets. He is in a nursing home which asks for top -ups. Can he also pay the top-ups himself or does it have to come from a third party?
Many thanks for your help.

Marion – the first thing to do is to appeal the CHC decision if you disagree with it. Regarding top ups (if your father genuinely isn’t eligible for CHC), he cannot pay these himself; they have to be paid by a third party. However, he may not need to pay them at all. This may help: http://caretobedifferent.co.uk/care-home-top-up-fees/

Barbara – the stages of the Continuing Healthcare assessment process must be followed (the Checklist assessment, the multidisciplinary team assessment and the completion of the Decision Support Tool, and the Fast Track where appropriate). The process involves looking at all relevant evidence of health and care needs, including input from the family.

At last, after first applying in May, when all papers were lost and then re-applying we had the multidisciplinary team (MDT) assessment and DST for my husband with 40yr history of Bi-Polar. His assessment identified 4 Domains with a High Score and recommendation for Continuing Healthcare (CHC) went forward. Surprise surprise, the CCG hasn’t ratified it or agreed to any placement yet though he has been in hospital for 14mths. Despite the Healthcare needs they are going down the route of Section 117 Aftercare funding and suggesting this will be a 50:50 split between LA and NHS. He’s been turned down by 3 Care Homes, but when I found somewhere that would take him the CCG have refused to fund that. Now I am having to look much further afield and it all looks just like delaying tactics. Exasperating.

Jean has now been refused CHC funding on the grounds that she does not have a primary health need, the nurse states that Jean does require someone close by 24 hours a day but her needs are all social care and can be managed by myself district nurses and carers, the advice regarding social care states to help people maintain their independence and play a fuller part in society, I do not quite see how this applies to Jean as she is totally dependent on others due to her having advanced Parkinson’s, Dementia and also limited use of both arms as the result of injury, following falls. I do see however that we are quite fortunate compared with many people here.

We have finally received a letter confirming that Jean would not be eligible for Continuing Healthcare (CHC) funding and that a copy of the minutes of the meeting were enclosed but they were not, so it is quite possible that there was no actual meeting, on quereing the way the assessment was done by a lone nurse, the nurse tells me that she asked Social Services to attend but they refused to send anyone as they were too busy, also the District Nurse (DN) who did the original checklist booked a weeks holiday!? So she was unable to attend, the DN had been seeing Jean for sometime and was aware of the problems we had, she had given Jean an A grade for mobility but this was downgraded to moderate by the nurse doing the assessment; she did change this however to High when she wrote her report, because just as she was about to leave Jean asked to go to the toilet and she obviously saw what a problem this was, lifting her and holding her every step of the way to prevent Jean from falling.

My brother has korsikov syndrome and early onset fronto temporal lobe dementia (pics) and went into a home in the next door county which was the nearest place that specialised in younger people with korsikov. As the ftd worsened the home couldn’t deal with him as they don’t specialise in that and he was given psychotropic drugs and sent to a psychiatric unit on a Section 2 where his conditioned worsened just because he was terrified and on drugs he was reacting badly to. We had been looking for a new home for him for some time because the home had been saying they couldn’t cope but were turned down by many dementia units as his needs were considered too great. Finally we managed to get him a place in a wonderful neurological unit that specialises in FTD. He was taken off Section and got there as soon as possible and finally began to stabilise but his needs are still very great and will continue to be so – and indeed will grow. He can walk, but has 1-1 care as he needs assistance to eat, drink, dress, go to the toilet, place himself on a chair to sit etc.. and gets confused, lost and upset on his own. He has some insight but can’t follow a thread of thought or put many words together. His care costs have more than doubled. we could manage them before but now its hard and may become impossible. However, trying to get a Continuing Healthcare (CHC) assessment done is proving impossible so far. The CHC team in the county he is now in are refusing to do it as he has recently moved in and they say the previous county should do it as retrospective assessment. The county he was in before (not his original home county either) have closed his case and records since he moved out and do not agree that it is they have any responsibility to do this as he is now presenting in another county. I am stuck in the middle unable to get an assessment with one side suggesting I sue the other. Any idea on how I move forward?

If this is a fresh applications for Continuing Healthcare (CHC) funding, the Clinical Commissioning Group (CCG) where your brother is now should be carrying out the assessment. If you are making a (separate) retrospective claim, then it’s possible the previous CCG would do that. The neurological unit may be able to put some pressure on the new CCG. Also, if you are paying care fees, it means that, in effect, the local authority (LA) has taken responsibility for your brother’s care, and yet his care needs may be beyond their legal remit – in which case the LA is acting illegally. The LA also has a duty under the Care Act to refer people for a CHC assessment. This may help: http://caretobedifferent.co.uk/care-act-2014-helps-you-with-nhs-continuing-healthcare/

I’m sorry if this is a little topic but could anyone answer this please,I have property and affairs power of attorney for my mother who has been diagnosed with dementia a month ago, I look after her and I’m just about to apply for carers allowance, but I was reading today that the health and welfare power of attorney is needed to make decisions about that persons daily routine, eg washing, dressing, eating, I haven’t got this type of power of attorney will this be a problem?

James – if the decisions you need to make are also tied up with funding, you may be able to use your financial POA for that. Alternatively, you can apply for a health and welfare deputyship. I do know that in some situations people are able to make health and welfare decisions for a relative without a formal POA.

My Mum sadly passed away in April. She had Alzheimer’s and was in a care home for 4 years at a cost of £3,800 a month. At the end she was unable to walk, talk or feed herself. Also she was doubly incontinent, had diabetes, chronic kidney disease and arthritis along with other complications. I have not been able to get Continuing Healthcare (CHC). Originally the reason was that her illness wasn’t ticking 3 of the high level categories. On the recent appeal in August the funding was still declined despite qualifying in the categories! The reason given was that she was too poorly to qualify!! I am so worn down by this and feel I have let her down as she worked until she was 74 and never took any benefits, it seems she was penalised for this at a time when her needs were desperate. Can you give any advise that would assist or am I fighting a losing battle?

My father in law has been in a nursing home for several years. For the first few years we had to pay the near £800 a month. Then he was assessed and was told he was entitled to it paid for him. He has continued to go downhill and NEEDS to be there more than ever. Now they are saying my mother in law has to start paying again after 3 years of getting it paid for. She cannot afford this and she cannot care for him as she has her own health problems now. Any advice is much appreciated.

Can anyone help with this one please. My husband has CHC and is still at home,,,,just, we have carers in for one hour of a morning every day. he has Alzheimers he is 59 he has very poor mobility, needs help with feeding is doubly incontinent and quite aggressive.
The time is coming for us to let him go but in the meantime he goes to Leonard Cheshire for one day from 10 – 3. CHC say they won’t pay for this as it is really for me to have a rest (guffah) but he is going there and he still needs to be cared for whilst he is there. Should they be paying for this, it is £56 per day. Thank you Sue

My Dad will be moving in with us as he is clearly unable to look after himself. he is very unsteady on his feet and keeps losing his balance. I work full time and my husband works 3 day week, so my dad will be left alone for somw considerable time during the day. would we be eligible for Continued Care

We have finally had a DST done for my partner Jean. The Checklist done in April consisted of two A’s for cognition and mobility, three B’s and the rest were C’s. The Multidisciplinary Team (MDT) consisted of only a Continuing Healthcare (CHC) team nurse who had asked me to get one of Jean’s carers to attend which I thought turned out to be quite crafty as the Social workers were all to busy to come and the District Nurse who did the Checklist had booked a weeks holiday, so in effect I paid for half the MDT. However I thought the results the nurse came up with were mostly fair: a Severe for cognition a Low regarding food and the rest were all Moderates including mobility, which is one that I totally disagree with but can see the nurses reasoning when reading through the list of options. Jean has to be lifted from a bed or chair then supported for every step she takes. Sit her on the floor and she would be totally unable to get up. Jean has a terrible falls history as recorded by the Ambulance service. I lift her myself mostly but call 999 when she has a heavy or awkward fall. Because Jean has advanced dementia she will mostly try to stand when left alone but I can’t avoid this as there are meals to be prepaired housework etc to be done. Would there be any point in appealing? I would also appreciate any advice regarding a hospital discharge – Jean was discharged from hospital last December following an admission after dislocating her left shoulder. Even though Jean was unable to do anything for herself, no Checklist or assessment was done at that time. I believe it was mentioned on here that this could be in breach of the Care Act and if an assessment had been done the NHS would have been liable for care costs until the final decision has been made regarding funding. I did not query any of this at the time as I was totally unaware of the existence of CHC funding.

I am a social work assistant currently based in a busy community adults team, my experiences relating to CCG & CHC teams are, to say the least frustrating & challenging.
A case I am presently managing concerns a person who was admitted to hospital, he has complex medical conditions including mental health & cognition impairments, requiring pressure care treatment & is unable to mobilise, he was considered medically fit & therefore I requested completion of a CHC checklist, he triggered for a DST, however this did not go ahead & he was placed in a nursing care home, the CHC team agreed to pay FNC, although a weekly payment of over £400 was outstanding with no prior agreement as to who would be responsible for the payment.
Initially I explained to the next of kin the DST was needed to establish if their relative had a primary care need & secondly confirmed financial details would not be collated as a DST outstanding & the need to clarify funding responsibilities was crucial, subsequently this would be deferred.
My confusion is, how can CHC team confirm & agree only to fund FNC cost & refuse to pay the full cost of weekly nursing placement fees in the interim period? In addition how is it possible for a high volume of people to be placed in nursing care homes & ONLY receive FNC?
I believe if a person is considered to have medical/nursing needs this would confirm they have a health primary care need & therefore be eligible to receive full CHC funding.
A DST was deferred by the CHC team, although the person, according to CHC met the health criteria for FNC, how is this possible without assessing the person & including all agencies/professionals involved, (the next of kin was completely unaware a checklist was completed & did not receive information in regards to the CHC process, finances or choices/options available to them).

I would appreciate any advice as I am trying to protect the person & minimise financial implications.
I also feel it important to offer relatives accurate guidance & ensure they have the correct & legal information.

April – your question about Funded Nursing Care (FNC) is one that many people ask. Indeed, the judge in the Coughlan case raise a similar point. There are doubtless many thousands of people receiving FNC who should actually be fully funded through NHS Continuing Healthcare.

We have already been awarded Continuing Healthcare funding but are having a review to try and get CCG to pay for full cost of nursing home. Can you recommend a solicitors as i want to have a solicitor at the review. Thanks

Hayley – if you’ve got Continuing Healthcare funding then the CCG should be paying the full cost of care in the care home. The best way to find a solicitor is really to simply google ‘solicitors continuing healthcare’ or something similar. Be sure that any solicitor you use is a specialist in this field.

Hi Tom – When a client/service user has been assessed by a social worker as having ‘eligible care needs’ (for Local Authority to provide services – either a package of care at home/residential care/nursing home care) the LA will complete a means tested financial assessment shortly after the social work assessment- the social worker will make a referral to the LA’s financial team – this involves a financial officer coming to the home to go through paperwork or liaising with NOK/POA to assist. The financial assessment outcome will state how much the client has to contribute towards their package of care at home (in my local authority it’s a maximum of £60 per week, if the client has over the means tested threshold (£24000 in my LA)- the house is disregarded as client lives there. In RH/NH placements – where CHC isn’t met – the same applies, a financial assessment will be completed and if their partner/ vulnerable adult/ disabled child still resides at the property it can be excluded from the assessment. Also, where the client doesn’t want the house sold, but has to make a contribution for their RH/NH care, the LA can arrange ‘deferred payments’ where the client’s contribution will be provided to the LA once the house is sold/ part of the estate.

Apologise if this doesn’t answer your question, it’s difficult to give an exact answer without knowing the specific details.

The capital threshold is £23,250 in England, not £24,000. (The information here on Care To Be Different relates to the care system in England.) There should be NO financial assessment until it has been properly ascertained who is legally responsible for paying for care. The purpose of the initial care needs assessment is NOT linked to a person’s ability to pay; instead, it is an assessment of a person’s care needs ONLY. There must also be proper consideration of eligibility for NHS funding before ANY financial assessment takes place. Proper consideration means the use of he Checklist. It is only if a person does not ‘pass’ the Checklist that any means testing should take place.

Hi Social Worker thanks for your comment, at what part of the process after meeting social services are you judged for having to pay for care, for instance if somebody has lived there from birth but is found to have a disability after the appraisal, can the home be still discounted after the assessment.

Hello thank you in advance for any info you can give me. My father in law has been in a care home for 4 years, he suffers from Vascular Dementia. The last few months he has deteriorated, remembers who we are but nothing else, sleeps odd hour but is awake all night, incontinent at times. The home and memory team have advised it is time to move him to their EMI unit. He is self funding. There is an increase in the cost and we were told there may be some financial help available. Do you know what this might be?

hi all,
i have just come across this thread – i am actually a social worker, and experience of CHC meetings and reviews.

– if any family asks the social worker/ health professsional you want your loved one considered for CHC , we have a duty to address your request and at least have an initial meeting/ or a health professional should explain to you why it is not appropriate if no nursing/ health needs are identified from the onset (we get a lot of families requesting CHC when there are no health/ nursing needs and a simple phone call to explain why CHC is not appropriate at this time solves this).
– CHC must not be confused with general/ basic nursing care. The majority of people needing homehelp/ residential care and nursing care have some form of nursing/ health need (whether its a diagnosis, district nurse input, med management..etc) but these can be well met with a package of care and health input.
– the vital difference is if someones primary need is one of health, and their needs will meet CHC criteria on the intensity, unpredictability, and nature & quality of these needs – this is what the CHC meeting will go through.
– The health professionalsocial / sworker have a duty of care to provide you with an information booklet/ advice re: CHC process before the meeting is held. You are allowed to invite the next of kin (NOK) and most important people to the meeting to act as advocate for your loved one.
– If CHC status is met (it is often hard to evidence and can take time to confirm) this means NHS will fund the placement or package of care at home. NHS CHC funded beds will still be in the same nursing homes as people who dont meet CHC – it’s just an issue of funding.
-Often when someone meets CHC they may be too unstable to go into care home and stay in hospital to be cared for; and often if likely to pass away soon, the CHC meeting can be ‘fast tracked’ by health and the usual long CHC meeting is not needed.
– Health/ NHS have a certain cost that they will pay for a CHC bed at a nursing home. As some homes charge ridiculous amounts and it’s not fair that NHS should pay this when we can find a suitable home which provides the exact same care, but may be less appealing to the eye. The discharge liaison nurse should give you a list of the homes that they contract with.

Hope this helps a bit – it is a complicated process and often families do not fully understand the process.

1) There must always be an assessment of care needs at the outset, and if there is any indication that a person might potentially be eligible for Continuing Healthcare funding, they must be referred for a Continuing Healthcare assessment. This is a legal requirement under the Care Act. Unfortunately far too many families are simply told (either by phone or in person) that their relative ‘isn’t eligible’ when there has actually been no proper consideration of care needs in relation to Continuing Healthcare funding.

2) It does not matter whether needs can be well met. It is always the raw underlying needs that should be assessed – as if no care were in place.

3) If a person is eligible for Continuing Healthcare funding, it does not matter whether they are in a care home, in their own home or elsewhere.

4) Regarding which care homes or care providers are relevant when a person receives NHS Continuing Healthcare, this article may help: http://caretobedifferent.co.uk/continuing-healthcare-funding-and-choice-of-care-home/. Note: It is ALWAYS a person’s care needs that take priority over any financial motivation on the part of the NHS. A family’s choice of care home is not simply about what is appealing to the eye but about the quality of care provided and how any move to a different home or provider may adversely affect their relative.

5) Families often do not fully understand the process because those working in health and social care often do not give families the correct information; indeed, many families are never told about NHS Continuing Healthcare and are, instead, wrongly told that their relatives will have to pay simply because they have savings and/or a house. It is care needs that should always be the starting point, not a person’s money.

I am a social worker. There are many clients in the community being cared for by loved ones which we don’t know about. It is only when a referral comes through to social services – via a GP, police, carer, family member, client – that we will make contact.

My elderly father moved to a nursing home 6 months ago and was given NHS Continuing Healthcare funding. The DST meeting was attended by a family member, a social worker and a CCG representative. We were informed at that time that a further assessment would be carried out in 3 month’s time and that only the CCG staff and family would need to be present.
Despite contacting the CCG department, a date for this review has not yet been made. My question is this: if when this meeting finally takes place (if it does) it is decided that CHC funding will be removed, do you know whether my father would be expected to pay for the last 3 month’s care?
Also, do you know why a social worker would not be required to attend a second meeting? And finally, does anybody have experience of these review meetings and whether it is commonplace to remove funding at this stage?
My father moved into a nursing home following a massive stroke which left him unable to cope on his own at home and requiring nursing input. He is a lot better than he was but I don’t feel that his needs have changed. I am also aware that my opinion may not count for too much.
Many thanks for your help.

My mum is 80 and before a stroke six weeks ago was living alone, independently and in quite good health; she was able to get around the house, cook meals, dress herself and handle bills and financial affairs etc. She has been told that she should now be in a care home as it is not likely she will make further improvements. She is unable to get up without help struggles to walk for a couple of steps and is now doubly incontinent. He speech is badly affected and she now suffers from Dysphagia and requires a pureed diet and thickened drinks. The social worker assigned to us immediately said we would have to pay for all her care without even having seen mum and when we asked about Continuing Healthcare she reluctantly said she would begin a Checklist but told us that we would not get funding as she was not bad enough – not having even seen her. My question is where do we stand with this as before the stroke she was fine.

Hi,
I am still fighting to obtain Continuing Healthcare (CHC) funding for my mum, even though she died in April.
I have to attend an appeal panel meeting with NHS England on Tuesday, however they have now said that they will not take into account the Checklist that was completed just before mum died, and they will not take into consideration the period from January 2016 when she suffered a number of strokes and from there her health deteriorated resulting in her death in April, as they say it is not within their remit.
However, previously they said that we could raise our concerns in relation to the Checklist and all of the errors surrounding it.

Also, the CCG and the CHC Lead are setting great store around the fact that mum’s care home notes repeatedly state that she was eating well and was in a cheerful mood and sleeping well, this they say points to the fact that she did not meet the criteria for funding.

Whilst this is right to some extent, it does not depict the full picture but, we fear, that it will be enough to convince NHS England thst declining mum 3 times was the correct decision.

Barbara – care home notes often paint an overly rosy picture of a person’s needs and wellbeing; we hear this frequently from many, many families and it’s really frustrating. Your appeal will be the period of care previously being assessed – so presumably your mum’s care up to and at the time of the assessment. However, the assessors should also have looked at the ‘near future’, i.e. likely changes in your mum’s condition and needs during the months following the assessment.

It seems to vary between local authorities. My LA states you can stay in the home if your under 16 or over 60, so that’s me stuffed; another LA I looked at out of interest had a policy that if you were born in the home and have always lived there you can stay. Shame.

Do you happen to know if attempting to transfer ownership of a home after a diagnosis of dementia is futile?
My mother has had an official diagnosis this week, I have always lived with my mother from birth at the same house, I’m 43 and have a son that lives with us 50% of the time, this is our family home it has taken 20 weeks to get a diagnosis for attendance allowance for my mother and when that has been actioned I will be an official carer, although I have been for years.
I have read about transferral of ownership as seen as deprivation of assets and I’m worried, we have not contacted social services yet as we don’t want to get involved in that loop as of yet, I’m not sure if that is a good thing or a bad thing, any help would be much appreciated,I’m very worried.
Kind regards Alan

wilson1973 – be very careful if you’re transferring any kind of asset or money at this point. Take good independent financial advice, otherwise you could fall foul of the rules about Deliberate Deprivation of Assets. Make sure any financial adviser you speak to is qualified to advise on care fees and also understands NHS funding.

Thanks – we have decided not to bother. Thanks for your advice. I suppose we will have to speak to social services for any help we can receive in the future. At the moment it does feel like an intrusion but I’m sure we will be grateful for any help they can give when life gets more complicated.

You may find that the home is excluded for financial assessment purposes for Social Care from the Social Services on the grounds that you are living there.

The easy route is to ask for a financial assessment for Social Care (not CHC) and see what the assessor says. Given that the assessor is expert in this area and that their advice is free and that if they say i’s not counted then you are free to continue.

Good luck

Kevin

Angela Sherman3 years ago

Keep in mind that not all people carrying out assessments – whether they be financial assessments or care needs assessments – necessarily understand the process or the rules; training for health and social care professionals in this respect is often woefully inadequate.

My partner had a massive stroke last November. After 10weeks in hospital he has been in a nursing home since February 1st. He had the test for nhs continuing healthcare funding by social services which he failed. He is blind in the left eye and paralysed down the left side. There seems no chance he will get any of this back, so will spend the rest of his life in the nursing home. He is 77yrs old and is paying the full cost. The stroke association have said there is no chance to get the decision reversed. He is being well cared for. What is your opinion on this situation?

You can appeal anything you feel was done incorrectly during the assessment, e.g. the scoring, the way the criteria were interpreted, the knowledge (or otherwise) of the person carry out the assessment, lack of appropriate evidence, etc. If you believe that care needs were played down or marginalised, and that the scores given should have been higher, put this all in writing and send it to the Continuing Healthcare team at your local NHS (CCG). Let them know that you wish the assessment to be repeated as a matter of urgency.

Hi, I have been told today by the manager of the care home whete my mum currently lives that you can only get CHC funding if there are nursing needs identified, could you let me know if this correct? Thanks for all the advice so far, it’s been so useful in meetings

My mother was been diagnosed with Alzheimer’s over a year ago and also has Vascular dementia caused by a bleed on the brain after a fall. She has a bowel problem that can only be rectified by surgery which her consultant believes she will not survive as she is 87 and very frail. As she cannot have the surgery she is prone to blockages which cause days of vomiting until the blockage releases itself. She has chronic arthritis and cannot walk unaided and is incontinent. All in all, a horrible way to live. She is in nursing care and all except £30 a week of her pension is paid out in care fees. She has no property and only about 13 thousand pounds in savings. Is it possible that she should be reassessed so that she does not have to pay towards her care?

Frances – yes, if your mother has never been assessed for NHS Continuing Healthcare funding (or she has been before but her needs have now changed), she should be assessed as a matter of urgency. Remember that her money is irrelevant in NHS Continuing Healthcare assessments. Very often health and social care staff will focus only on means testing, and yet this is strictly secondary to an NHS Continuing Healthcare assessment. If no one has ever assessed your mother before for NHS Continuing Healthcare, and if she proves to be eligible, you may find you can also reclaim some of the care fees she’s already paid. This may help: http://caretobedifferent.co.uk/just-started-applying-for-nhs-continuing-care/

This is a very real issue and not all about funding. My mother has been assessed and does not qualify for CHC funding but her assessment showed that she does need nursing care. However, like Mel’s mother above, she does not need medical nursing care just extra time as she is blind and can’t feed herself and is in a wheelchair. The fact that she needs ‘nursing care’ seriously restricts which care home she can live in – the current nursing home is not at all satisfactory but good residential homes in the area can’t take her as she has been assessed as needing nursing care. We want to move her from the present unsatisfactory accommodation but other homes can’t take her so long as she needs nursing care. At present the NHS pay £112 to the nursing home for the nursing care and she pays for the residential care. So at present she is condemned to live in a home where the care is poor and can’t move to a better residential home. Can the NHS pay for extra help at a residential home?

Hi, I wondered if there is any definition of nursing needs within CHC assessment. The recommendation on my my mums assessment states for her to move to a nursing home but my mum has no medical nursing needs and she does not want to move. The residential home she lives at say they are short staffed so cannot provide the level of care she needs, she uses a wheelchair and needs support to dress and wash, they say this takes too much time and they don’t have careers who can do this. The DN who wrote the report has now said the recommendation could be amended to say Mum requires additional help at the residential home. Is this possible if they agree and if they do agree do the Nhs pay the care home fees and the additional support fees? Many thanks for your time.

Hi – My mum contracted Herpes Simplex Encephalitis which has left her with a brain injury and she has been placed in a Nursing Home. She was in hospital for almost 3months and as she requires 24 hour care and has dementia like symptoms. We were unable to care for her at home. My dad is 75 and they own their home. We are in Scotland and she receives Local authority funding and we top this up with £129 a week and she is granted £25 a week from her pension for personal items (she receives £156 a week pension). I am not aware of her ever having been evaluated for CHC as the hospital brought social services in when they had to discharge her. Is the process the same in Scotland and should I have been informed about this and do I need to be paying this money every week.

Hi, I live with and care for my Grandad who suffers from Vascular Dementia and Alzheimer’s. Me, my husband and one of our sons moved in with him 6 years ago as it was obvious he needed help. We gave up our privately rented house, and in more recent years I’ve had to give up my job. Granddad owns his own home. It’s been in our family since 1942 and is willed to my Dad. My Grandad has some savings but due to work that needs carrying out on the home and recent respite care fees he’ll soon be under the savings threshold.
The last couple of years caring for him has been to be honest hellish. He’s still quite mobile so needs to be watched at all times. My own health both mentally and physically has detoriated due to the stress and mostly existing on 2-3 hours sleep a night.
I urged my Dad to get LPA a long time ago but he didn’t so no one has it, although Dads a joint bank account holder.
Social services have been little to no help. So far I’ve put off a financial assessment as I wasn’t sure what would happen but one is booked for a couple of weeks time. At the moment Grandad gets a carer in the morning to assist with washing and dressing…that’s it.
A lovely district nurse has helped apply for Continuing Care, that was a few weeks ago…I’m still waiting to hear back.
In the meantime I’ve had a meltdown, I just burnt out. Grandads been in a home for 11 days which we’ve privately funded, but he comes home today. I’m dreading it.
The home are aware that we’ve applied for Continuing Care , they said he’d probably only be classed as a ‘medium’ and recieve in the region of £150 a week funding? I just don’t understand it all at all.
I’m feeling pretty desperate. Can anyone advise me? Do I still go ahead with the financial assessment with the council? They’ve already said the house will need to be sold.
Angela

Angela – it sounds as though the care home don’t know what they’re talking about. Continuing Healthcare funding does not have any ‘medium’ band or any specific payment of £150. In addition, no one should be talking to you about any financial assessment or about selling the house until the Continuing Healthcare funding assessment process has been properly carried out and a reliable decision made. You mentioned that the District Nurse has helped apply for Continuing Healthcare. What did he/she do? Was it a Checklist? It doesn’t take weeks for the outcome of the Checklist to be known – instead it’s pretty instant – so it sounds as though he/she may not know what they’re doing either. Read through the article on our blog. They’ll help you, including this one: http://caretobedifferent.co.uk/nhs-continuing-healthcare-checklist-assessment/ If it eventually become clear that your granddad does have to pay for his career – and only IF – the house may be protected because it is your home.

My 78 year old mother has suspected dementia. She has had a CT scan and we are waiting for the results from a home visit from a memory team in a couple of weeks. I look after my mother although unpaid as a carer at present and I live at home full time as I have always done since birth. I’m 43 – my 13 year old son also lives with me 7 days out of 14 as he also lives with his mother. I am absolutely petrified that we will lose our family home. My mother can hardly walk now. I clean her, help her drink liquids and cook for her,she is unable to look after herself and is rapidly getting worse. Could you advise me as to what I can do to keep the family home please home. She doesn’t want to go in to a care home and I don’t want her to either. We would just like to care for her at home. Any help will be much appreciated. Kind regards Alan

Alan – it sounds as though your mother needs to be assessed for Continuing Healthcare funding. This should be done before anyone starts talking to you about selling the house – or anything else financial for that matter. Also, as the house is your home, it will almost certainly be protected for that reason also.

Following an unsuccessful appeal for CHC funding for my late mother I appealed to NHS England in October of last year. They sent me some forms to fill in which I completed and returned immediately however, I have heard nothing further from them. I have written to to them requesting updates of the situation yet it appears that my letters are being ignored and left unanswered. I was wondering if you or anyone else have any advice to offer regarding this situation.
Thank you for excellent website and the invaluable help it offers.
Chris French

That sounds very frustrating, Chris. Keep badgering them in whatever way you can – phone, post, email, etc. It shouldn’t be like this, of course, and people working in public office should not behave in such a manner. Unfortunately, many families report similar experiences. My response to Sue Taylor here may also help you – in perhaps also putting pressure on the local authority for their failure to look at their own legal position when your mother was in care. They remain (potentially) in that illegal position until your appeal has been properly dealt with. Thanks for your kind words about the website. Appreciated.

Earlier this year my Father was in hospital following a fall and a chest infection, he has vascular dementia. His condition deteriorated to the point it became obvious he needed 24hr care in a residential care home. We tried to get a CHC assessment done and after a lot of trouble it was done the afternoon before he was to be discharged into the care home. The assessment was carried out in the presence of myself and my Mother – we both have power of attorney and the result was my Father should be referred for full assessment for CHC funding. The next morning the discharge nurse who had carried out the assessment telephoned my Mother to say there had been a great improvement in my Father’s condition and she had therefore redone the assessment and the result now was he should not be referred for full assessment. She said if my Mother did not agree over the phone my Father would not be able to be discharged and would probably lose his place at the care home. He had at this point been in hospital for over 7 weeks and obviously my Mother gave her agreement over the phone as she desperately wanted my Father out of hospital. We then attended a meeting with the discharge nurse 2 days later and I questioned her at length on the changes she had made to the assessment, she had changed 5 B’s to C’s. She became upset and said she could change some back – such as nutrition and medication and then said she would come out to the care home and redo the whole assessment. She went to speak to the legal department at the hospital as I wanted copies of both assessments, when she returned she informed us that she had been told she herself would not do the assessment at the care home but someone else would come and do it. Over the next couple of weeks the social worker assigned to my Father changed twice and no one came out to redo the assessment. I had by this time sent a written complaint to the hospital.

A new social worker was assigned in May and came out to do an assessment to see if my Father needed to be in full time care and agreed yes he needed 24hr care. At this meeting I asked about the CHC assessment and he reluctantly agreed to arrange for it to be done, he extended the respite care until 16th June. He wanted my Mother to have a financial assessment done but I insisted she would not do that until the CHC assessment had been done. On 14th June having heard nothing I phoned him and he said he would come out the following week and would in the meantime extend the respite care again. We had the CHC assessment done at the care home on 24th June, the outcome was referral for full assessment. The social worker e-mailed me saying he had spoken to CHC and it may take them 28 days to consider the application. He informed me that my Father was discharged from hospital under a social care remit to the care home as he was considered not to meet CHC funding criteria at that point in time and the significance of social care in this context is that social care services are financially assessed services. He has now clarified that if my Father does not qualify for CHC then my Mother will have to pay fees backdated to 23rd March. I think the hospital fraudulently discharged my Father under a social care remit as the second assessment done without us present was clearly untrue, no one with vascular dementia could improve that much overnight and my Father has showed no improvement since. I am thinking about getting a solicitor involved but am worried about incurring a large legal bill on top of the back-dated care home fees. Please could anyone let me know where we stand with this or what to do next?

Sue – it sounds far too ‘convenient’ for the hospital discharge nurse to unilaterally declare that your father no longer warranted a full assessment, given his state of health. It sounds as though they were just trying to get your father out of hospital no matter what. You were absolutely right to refuse any financial assessment until the CHC had been done. If your father got through the Checklist – and it sounds as though he did in the care home – then the full assessment should be triggered immediately and scheduled as soon as possible. It sounds as though there have been many breaches of the Care Act here. This may help you: http://caretobedifferent.co.uk/care-act-2014-helps-you-with-nhs-continuing-healthcare/ The local authority is quite possibly currently in an illegal position now, by effectively accepting responsibility for care that is beyond their legal remit. You could contact the Head of Adult Care at the local authority and highlight this point to him/her. You could also state that you will be making a complaint to the Local Government Ombudsman about the local authority’s failure to abide by the Care Act and in trying to extract financial information before the CHC process has been properly considered. The social worker should only conclude that your father doesn’t not qualify for CHC funding if a proper Multidisciplinary Team meeting has taken place – with your input and involvement – AND only if the MDT made a recommendation of no funding AND only if the CCG decision making panel agrees with that recommendation.

As I mentioned before a checklist was done for Jean and the District Nurse (DN) said she sent it in on the 16th of April but the CHC dept say they did not receive it until the 6th of June and it seems to have been going to and fro for correction ever since, its back with the DN at present but she’s away so I could not speak to her. Is this just bad luck and we have to accept that we have possibly missed out on a few months of care help. Would there be anyone I should complain to. Thanks, John.

If it’s the CHC team being obstructive – and it sounds as though they are – then make them aware that you will be contact NHS England about their behaviour. The CHC team and/or the District Nurse should also let you know in writing why exactly there has been such a long delay between the Checklist first being carried out and its apparent receipt in early June. The District Nurse has a responsibility to account for this also.

I contacted NHS England and they said to contact the local CCG, this I did and within a few days I had a phone call from the CHC team to say the checklist had been cleared for the next stage but they could not give an explanation for the delay. Would there be any point in pressing them for this information? Thanks John

I received a letter confirming the positive outcome of Jean’s checklist and an onward referral for an assessment of eligibility has been made, I am told it will be placed on an allocation list, lists are prioritised by order of clinical risk, health and environmental risks, and the list is reviewed on a regular basis. Due to the process of prioritising cases the length of wait is variable, dependant on the individual’s clinical needs. I do wonder if this could mean a very long wait as though Jean is unable to do anything for herself I am not sure exactly what clinical needs cover.

John Mallett3 years ago

Could this mean the possibility of CHC funding is all over for Jean, if Jean is placed on an allocation list prioritised as the CHC team say by clinical risk, health and environmental risks then she may never come to the top of that list and possibly no one would, how would any individual know.

As i said before the District Nurse (DN) said that she had forwarded the completed checklist for Jean on the 16th April, CHC claimed not to have received it until the 6th of June and returned the checklist to the nurse as it was not completed correctly, I asked for a written explanation as to why there had been such a long delay, April to June but received no reply, I recently asked for a copy of Jean’s checklist which they promptly sent, this list was dated the 24th of April and the DN had given Jean two A’s, 3b’s and the rest were marked C I thought this to be a fair assessment of Jean and the nurse had done her job fairly and was telling the truth regarding the date that she had sent it to CHC. As you suggested Angela it was the CHC dept causing the delay and even now four months since they received the list nothing has moved forward.

A means test was carried out and a care package set up for Jean in 2014 and we have been paying ever since, I wasn’t aware of CHC funding it was never mentioned and it was only after I found the excellent Care to be different site that I became aware that this might have been available. Jean was diagnosed with Parkinson’s in 2010 and prescribed six Sinemets per day gradually increased to ten and for the next four years suffered terribly then in 2014 after a really nasty fit she was taken by ambulance into hospital where apparently she nearly died. The hospital immediately reduced the Sinemets from ten to four per day and the discharge letter said she had been overdosed by me (Sinemets are a prescription drug – don’t know where I was supposed to have got extras from). We were then asked about money, property etc and Social Services (SS) insisted on a care package which i was not able to refuse. I found this quite upsetting as I had done everything for Jean and always timed her medication with the alarm on my mobile phone. The carers and SS soon became aware that there were no problems with medication or anything else at home and I was able to do whatever I wanted regarding carers but I still have to pay when I need someone to look after Jean.

I have now been sent a copy of the assessment for Mum correctly completed by the DN and SW; however when I contacted the DN about completing the assessment again, (it was returned as there was no recommendation included in the original and it had been done by a DN only) the DN advised there would be no need to speak to me or my Mum again. I have now been told by my Mum that the DN and SW visited her to discuss the assessment and the copy I have now received recommends that my Mum moves from residential care to nursing care as the residential home cannot meet her needs. This is the first I have heard of this recommendation and I would definitely disagree with this recommendation as my Mum has no nursing needs. Can you advise if I am able to challenge this recommendation even though the assessment has been submitted before I or my Mum saw a copy of it?

If we do achieve CHC funding for Jean would this mean she would have to have full time care as we don’t need that, we manage quite well at home but I have no free time as Jean cannot be left alone, I do pay for carers but have to book them in advance and it also gets expensive, I feel we should be entitled to some help. Jean has complex stage Parkinson’s disease, Dementia and the hospital says zero mental capacity. She is unable to do anything for herself (the hospital discharged her like this without any assessment for CHC funding). Jean was admitted to hospital because she fell and dislocated her shoulder. The Doctor in charge drastically changed the timing of her Parkinson’s medication towards the end of her stay which caused Jean a lot of suffering, I believe this was done to make Jean slightly more mobile in the morning before discharge.

CHC would cover all assessed care needs and the care provided would be whatever she does or doesn’t need. Also the NHS should not automatically expect you to be providing the care yourself, John, just before you’re at home. On a different note, you mentioned that the hospital says that Jean has zero mental capacity. Whoever said that may not have understood what ‘capacity’ is. It relates to a specific decision that needs to be made about a specific thing and a specific time – it’s not a general view of a person’s cognitive state or ability: http://caretobedifferent.co.uk/mental-capacity-assessments/

Hi Melanie Jean has only had the checklist done, I imagine that would be ok being carried out by the DN, just that someone realised the nurse had made a mistake but did not bother to inform her, just waited a couple of months until she asked what the situation was, delay tactics I imagine.

Hi
Thanks for your response; apparently the DN did not know she had to complete with another professional so there is now a meeting with a Social Worker to complete again. Do you know if the time period for a decision starts again from when the new assessment is submitted. I did advise the DN at the meeting with Mum and myself that I thought it was a Multidisciplinary Team (MDT) who should complete, but she said it was ok.
John; if it was just the DN who completed it may be worth checking if they have to have a 2nd professional present to complete again, please see Angela’s response to my initial query.

Hi Melanie I would also be interested in the answer to your query, my wife Jean had a checklist done by a DN and forwarded to the relevant department on the 16th of April, having heard nothing she contacted them last Friday and it seems a question was not answered correctly and the checklist will be returned to her for correction.

Hi
My Mum had a CHC assessment completed 5 weeks ago and a checklist 6 weeks ago; I have been told today that the assessment was completed fully and that no recommendation was made in part 3. The DN who completed the assessment has been requested to complete part 3 and resubmit. Does anyone know if the period of time for a decision start again from the date of resubmission?

Hi,
Can any body offer any advice please.
My mum died a few weeks ago, cause of death was pneumonia brought on by aspirating.
We are embroiled in a long ongoing battle to obtain CHC funding, however, following a stroke which mum had in January 2016, the hospital discharged her back to her care home as end of life, she suffered 2 suspected further strokes after she came back.
Mum was referred to the palliative care team and all end of life drugs were sent out with her.

The day mum arrived back at the home, the manager requested a Fast Track assessment to be carried out. The next morning she was declined, no paperwork of any kind was completed, she was declined on the basis that she had eaten some breakfast, had taken some fluids and had passed water.

Mum was diagnosed as having moderate dysphagia and the thickness for her fluids had to be increased from 1 scoop to three.

Mum had suffered 2 separate incidents of aspiration, after the second incident the district nurses carried out a Checklist, but, without informing the manager or duty managers at the home and we the family were also not told or given the opportunity to attend.

Staff who do not regularly work on mum’s unit were asked to be present as advocates.

The nurses scored mum as a C and stated that she was at low risk of aspirating, this score was later changed by the ratification panel to an A.

Subsequently a few weeks later mum died, having aspirated again.

We made a complaint against the nurses, the decision went against us in favour of the nurses.

We were then invited to a meeting, but they still will not accept responsibility and are adamant that their actions and decisions were correct. We do not agree, but are unsure as to whether or not we have a case.

Had anybody been through anything similar or can offer advice or opinions.

So sad to hear this, Barbara. It’s an awful situation and experience for you – and of course for your mum before she died. If the nurses could not see what your mum’s needs were then they were potentially negligent. Regarding the Fast Track, this should not have been declined if an appropriate person put it forward (someone involved in the…”individual’s diagnosis, treatment or care and are registered medical practitioners (such as consultants, registrars, GPs) or registered nurses. These can include senior clinicians employed in voluntary and independent sector organisations that have a specialist role in end-of-life needs (for example, hospices)…” (Fast Track form) These are just some examples of appropriate people. Also see page 6 paragraph 12 of the Fast Track form: “A CCG upon receipt of a completed Fast Track Pathway Tool, MUST decide that a person is eligible for NHS Continuing Healthcare. Therefore, where a recommendation is made for an urgent package of care via the fast-track process, this should be accepted and actioned IMMEDIATELY by a CCG.” There is also nothing that says the Fast Track will be declined if a person receives fluids etc. It’s nonsense. Nor is there any requirement for a specific prognosis to be made in terms of the length of time a person has left to live. https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/213140/NHS-CHC-Fast-Track-Pathway-tool.pdf The CHC assessors have also failed to follow proper process in not informing you about or inviting you to assessments. This may help you regarding an appeal: http://caretobedifferent.co.uk/appealing-a-continuing-care-funding-decision/

My Mum is already receiving continuing care and we have been told they won’t pay the full cost of the home which is £1500 a week and will only pay up to £1200 a week. Hence why we are having to top up the extra £300 a week. This isn’t right is it. How can I get them to increase this? Mum is very settled in this home and doesn’t want to move- my worry is they will try and move her to a cheaper home, which won’t have the small bed ratio and tracking ceiling hoist that she needs. Plus she is on bipap overnight.

What an eye opener all of this is having just come across it with my elderly 91yr oldmother. She was admitted to a&e following a fall, has fractured her ankle; having put a plaster of Paris on they moved her to a local community hospital where she is not allowed to weight bear at all. She has now got a urine infection (which they are treating). The physiotherapist is unable to do any rehabilitation or mobilising so they have now said that the health authority, because they need the bed, are moving her to a nursing home under the Continuing Care Assessment. I have requested that we have a say in where she goes but have been informed that it is the NHS decision not ours and will be informed when she is moving. What do we do if the place she is sent to, we feel is inappropriate/unsuitable?
Mum does have mental capacity, however, we as a family have two powers of attorney (financial and welfare) registered, and are wondering can we use it?

Hello Kay,
Sorry to hear about your mothers fall.
Under continuing care guidelines, a family representative attending is acceptable, if available, when making the assessment. The continuing healthcare asessors will use a decision support tool (DST) which uses various health domains (Cognition, Behavioural, Mobility, Continence etc etc) to make a decision on eligibility. I suggest you download the guidelines https://www.gov.uk/…/National-Framework-for-NHS-CHC-NHS-FNC-Nov-2012.pdf
Its heavy reading but it lays out how the full process is undertaken. If in the event your mum isnt eligible and she isnt reliant on local authority funding, you will get awarded Funded Nurse Care (FNC) which is £112.00 per week. If it will be your mother funding her own care then the balance will have to be paid by her assets. In any event you should have a say where your mother is placed during the continuing healthcare meeting you should attend. i.e. She shouldnt really be placed out of the locality she is familiar with or too far away from family.
The NHS arranged this for my father without my input but I soon quickly put a stop to it. I suggest you try ringing local nursing homes to try find one suitable, especially if you are arranging the payments on your mothers behalf (Not that POA means they have assets of course). You have to be persistent with these people bordering on beligerent! Find out who the nominated nurse for her in the hosptal ward or if any social services care for the elderly are involved and harrass them. You are dealing with automated beaurocracy here so you need to get stuck in!
If mum has had visits from community matron nurses, try to get the daily log visit book which should contain destils of their visits, why and possibly an assessment of their own. In fact its important you get all medical information you can lay your hands on because the CHC assessors deliberately overlook this information in the DST in my experience.
To be honest with you , just because a person is elderly and may have mobility issues from a fall, often this may not be enough for full care funding. The care domains I mentioned often have to show a complexity and unpredictability, that can often be well managed by care but still remain major health issues. From the sounds of it mum is immobile now. Often this can have impact on Continence because of immobility and hence UTI`s and bedsores (Waterlow scale). So these two domains are related but not necessarily complex or unpredictable. You`ll get a higher score on Drug Therapies and Medication if mum is on four or more medications as there is a known risk with that on elderly patients.
For example, my father had High scores in the DST in 4 domains and 1 Severe relating to his medication that seemingly could not lead to managing it well which impacted his Behavioural domain.
Obviously, each decision is taken on a case by case basis and without going into personal details, only the family may have that to figure out how their relative could/should be assessed in each domain.

Good tip about gathering as much evidence as possible, Chris. This may also help: http://caretobedifferent.co.uk/supplying-evidence-for-continuing-healthcare-assessments/ Just to clarify a couple of other points you made: 1) Funded Nursing Care @ £112/wk – this is given to people who don’t qualify for full NHS Continuing Healthcare but who do have some nursing needs. It has nothing to do with a person’s money or assets; it’s not means tested. 2) Paying for care – if a person does genuinely have to pay for their care (and this is decided through a Continuing Healthcare assessment ONLY, not through a means test) they will need to use their savings/assets ONLY if their money totals £23,250 or less. After that the local authority will pay, but the person may need to make a contribution from income until their money falls to £14,250. But remember that no one should talk about a person’s money or means test them until the Continuing Healthcare assessment process is complete.

Kay – the NHS cannot dictate which specific care home your mother goes to. You have choice. I’m suspicious that they’ll want to push her into the cheapest one. Find a care home you like and ask them whether they have – or have had – residents funded through NHS Continuing Healthcare (CHC) . If they have, the NHS can’t argue that the home is too expensive. And even if they haven’t had anyone funded that way, that may not mean they can’t take CHC-funded residents. In addition, the home MUST be able to meet ALL her care needs. Also, your mother must be assessed for CHC before being discharged fro hospital. This may help: http://caretobedifferent.co.uk/paying-for-care-between-hospital-discharge-and-funding-decision/ you can also quote the Care Act to help you: http://caretobedifferent.co.uk/care-act-2014-helps-you-with-nhs-continuing-healthcare/ Be sure to read the comments below the article, too. The local authority must be involved.

Hi Kay,
Be very firm that you will not allow your Mother to go to a home that you have not seen. I have just had experience of this and they do vary. One I visited was horrendous. Check on the official website of the body that assesses care homes and grades them . You want at least a good one – not one that is underperforming and then choose the local ones and visit them and give your short list of where you would prefer her to go. I stuck to this like a lioness and got what we wanted.

My Mother was fast tracked for Continuing Care and got it post a stroke. She is now in the care home and severely disabled. She does not talk, move or able to eat or do anything. Only movement is her eyes. The NHS now after 4 months want to reassess her and say that if she does not qualify we or the local council will have to pick up the payment within 2 weeks of the panel decision. is it true that it’s that quick? They want to means test her in advance of the panel decision. I think from what you write that could be illegal so I have said no I do not want to discuss that until the panel have come to a decision – help! All very distressing

Jacqueline – you’re correct. No means testing should be done until there has been a proper review of your mother’s Continuing Healthcare funding. It is only if her care needs have genuinely decreased – and only if they have decreased to such an extent that they are now primarily social care needs – that there should even be any mention of means testing. But money should not be mentioned at all until the proper review has taken place – and taken place according to all guidelines and within the law.

Thank you. I suspect the assessor was working outside of what she should have been. She is the NHS Continued Care Nurse from the local hospital who organised to meet me at the home to do my Mother’s assesment and she asked at the end of the 2 hours I spent with her talking about my Mothers needs and condition whether my Mother owned her own home. Since my previous email, I did challenge politely and said that when we next meet I am happy to continue the assessment and the local council social worker is welcome to join us if she is part of the MDT that make the decision re whether NHS CC funding continues but my Mother would not want to discuss her finances until the decision had been made by the panel. She said that it was best to be prepared and put in an email that I needed to be clear that if the panel says no that the home will invoice my Mother the next day to start charging her. She added verbally that it was best to start giving the means test information now otherwise the family would be ‘out of pocket’. Sadly since I was waiting for the next meeting with them in a week’s time yesterday at my visit my Mother was very distressed and breathing erratically. As so often I had to point this out to the nurse at the home. Mum has been admitted to hospital and had a (very obvious to nurses in A&E) serious urine infection and pneumonia. She is being managed for her last days, feeding has stopped and the care is amazing – in the hospital. So it seems we will not be put through the indignity and frankly what I feel was bullying, although I was standing my ground, of the NHS Continued Care Nurse. Maybe she was just trying to help and be realistic but it all felt wrong and with your reply and wonderful website that helped me understand the process and my Mother’s rights I was getting fully prepared to stand our ground. How sad that things have to end up like this when it’s such a difficult time for the sick person and their loved ones. I am considering making a complaint if I have the energy after all that is happening. You know what it’s like – so much else going on that sometimes you just let things go. If I did complain do you think it’s worth it? I would do it if it made things better for others. Who would it be best to approach? Thank you

So distressing, Jacqueline. I can’t see how the Continuing Healthcare was trying to help; it sounds to me as though she was trying to prepare you for paying. She has either had woefully inadequate training or she is ignoring care funding law. If you decide to complain, you can send this to everyone involved – including the Head of CHC, CEO of the CCG, Head of Adult Care at the local authority (the LA may not have properly fulfilled its legal duty to decide whether your mother’s care is beyond their legal remit: http://caretobedifferent.co.uk/care-act-2014-helps-you-with-nhs-continuing-healthcare/), care home manager, NHS England, etc. This may seem a bit like overkill, but sometimes it takes that to get the relevant people’s attention.

My Mother with ms is living in a nursing home cc funded, but we are having to top up £300 a week. From what I have read this seems completely unreasonable. How do I get cc to agree to pay the extra £300 as they said they would only pay up to £1200?

Hayley – do you mean that your mother is funded by the local authority? If so, the first question to ask them, before anything to do with top ups, is whether she has been assessed for NHS Continuing Healthcare funding. If she hasn’t, this should be done as a matter of urgency and with your full involvement and input.

Decision Support Tool Assessment:
My mother died in 2014. She was 101 and had been bed bound and completely helpless for the last 16 months of her life. Despite asking for a continuing healthcare (CHC) assessment on several occasions, the Nursing Home rebuffed our requests telling us “it’s not worth it, you won’t get anywhere until your money runs out” etc. Finally (4 months before she died) my mother’s money ran out and she was assessed for CHC.
Since her death I have applied for retrospective CHC for the last 16 months of her life. A Needs Portrayal Document was completed and put before a Multidisciplinary Team who applied the Decision Support Tool assessing her to be HIGH need in 2 domains, MODERATE need in 4 domains and LOW ned in 3 domains. My mother was refused retrospective CHC funding. I am disputing the assessed need in 4 of the care domains.
My questions are:
1. What should be the membership of the Multidisciplinary Team (MDT)?? The MDT assessing my mother’s case consisted of 2 people, a senior social worker and an operations manager. Should the MDT have wider representation than this?
2. The family would challenge the MDT assessment. Applying the Decision Support Tool criteria, we would assess my mother as HIGH need in 3 domains; MODERATE need in 5 domains and LOW need in one domain.
3. Is it worth appealing against the MDG decision? I don’t want to waste everyone’s time; but feel the decision is unjust and does not reflect my mother’s condition.
4. If it is worth appealing, where can I get help and advice about this?
5. The ‘system’ seems deliberately set up to deny impartiality and fairness to the vulnerable elderly in care homes, and their relatives trying to get justice on their behalf – how can we get a critical mass of people who are concerned about this, whether through their own experiences or socio-political concern, to bring about a change in the Law?
6. What happened to the Dilnott Committee’s sensible advice? How can it be revisited and become legislation?

Terry – the nursing home’s statement that it’s not worth it and that it depends on a person own money shows the depressing and fundamental lack of understand they have of Continuing Healthcare. There is also a conflict of interests when it comes to care homes, as they receive less money from the NHS in Continuing Healthcare than they do if a person continues to pay for themselves. Your questions: 1) Where was the operations manager from? The NHS? 2+3+4) I can’t say whether your case holds up or not without looking at it in depth. I do know of people who have received the funding without any Severe scores, but not many. However, follow the tips in this article about appeals: http://caretobedifferent.co.uk/appealing-a-continuing-care-funding-decision/ The NHS must send you information about the appeal system. 5) Many people would echo your sentiments here. It’s not really the law that needs changing though – it’s the maladministration in the assessment process and the failings in the interpretation of eligibility criteria. You may find this video from Prof Luke Clements helpful: https://www.youtube.com/watch?v=HrpFLLwGqhs If you’re on our mailing list, you may have seen our recent note about the National Audit Office too. Many people are sending complaints about CHC. 6) Good question! What a waste of public money that seems to have been.

My husband had a stroke in January 2016. He was transferred to a stroke rehabilitation centre in March 2016. He is double incontinent, paralysed down his right side, cannot speak and is fed through a peg. Today I was informed by his consultant that they are considering discharging him home because in their opinion he has the mental capacity to make this decision and under the current law are obliged to carryout his wishes. 1 Week ago I was told to look for a nursing home for him as they didn’t feel they was anything further they could do for him and he would need 24 hour care. When I found an acceptable nursing home I was told by his social worker that he would not be assessed for CHC until he had been transferred to the nursing home. The nursing home said they wouldn’t accept him until they knew who would be responsible for payment. I informed his social worker who said that assessment would not be possible until after discharge and that any money paid by the family would be refunded once he had been assessed. My argument is, what if he doesn’t get full CHC funding and I cannot afford to pay for his care, what happens then? He has saving od £26,000 and joint ownership of our home.

My Mum has been in a care home for almost 3 months after a serious stroke. We found out about NHS Continuing Healthcare (CHC0 on the internet so asked Mum’s GP, Social worker and care home about getting an assessment. All we were told was a big fat NO!!! and that we would be wasting our time as she would not qualify. Also none of these professionals were qualified to undertake the stage 1 checklist!
We contacted the local Clinical Commissioning Group (CCG) who were not helpful either.
We have found out today that a Funded Nursing Care (FNC) assessment was carried out last week at the home without our knowledge and without any member of the staff in attendance. They also said that while they were at the home they also undertook the NHS CHC assessment.
The senior nurse at the home said that nobody was with mum at the time and they were not aware of the NHS CHC assessment being completed.
We are furious that we as a family were not informed as we would have been at the assessment.
Can you advise us what we should do next?
Kind regards
Adrian

Adrian – it’s very common for people working in health and social care – including assessors – to say things like “It’s a waste of time” or “You won’t get it” or “It’s not worth it” and other similar nonsense. Not only is this quite wrong – because the only way to know is for the assessment to be done – but it also reveals the mindset and (possibly) lack of training and awareness of the person who is saying it. A Checklist can be carried out by any health or social care professional who is trained to do so and who understand the care needs of the person being assessed. There is no assessment for FNC as such; any decision about FNC can only be made AFTER a Continuing Healthcare assessment. This may help: http://caretobedifferent.co.uk/how-is-registered-nursing-care-contribution-rncc-assessed/ The person who said they did both assessments at the same time doesn’t know what they’re talking about. Make a strong complaint to the CHC team; copy it to the Head of the CCG; demand a repeat assessment, as the CHC team has ignored so many guidelines here. You could also write to the Head of Adult Care at the local authority and let them know that the NHS has illegally passed responsibility for care to the local authority by failing to carry out the proper Continuing Healthcare assessment process. This means the local authority is now in a potentially illegal position. Read the National Framework guidelines and pick out every single failing and put this together as a catalogue of errors. This may also help as it gives you links to the main guidelines: http://caretobedifferent.co.uk/continuing-healthcare-assessment-guidelines/

Adrian, yes read the guidelines, they are very specific and will help you to explore the failures in procedure that has not been undertaken correctly.
I had never heard of CHC until the hospital carried out an assessment on my father in my absence. They now wished they did not alert me of the CHC funding because I have been harassing them at every twist and turn since January 2015 and reminding them of their failures. I kept them in a meeting for 4 hours once!
It is a long tedious battle but you can do it. But bear in mind there has to be at least 3 care domains with High or 1 Priority to get the funding, so it may seem that a person has had a major health issue but it doesnt impact on the overal CHC assessment. The local CHC team to me have the habit of using an assessment form with the Priority level missing from the form, so it makes it impossible to get a Priority Level. Very sneaky.
Staff are conditioned to believe it is impossible to get unless at end of life care. My father had a nurse assigned to him on ward and she told me “he wont get CHC funding”. I insisted an assessment be carried out and it was. Ironically, the nurse had input at the meeting and could not have been more truthful about his needs, which actually helped in funding being awarded.
Get all records apertaining to health- GP Records (who will resist), Community Matron Assessment/Risk Assessment if they visited, Carers records, Nursing home records, ambulance attendance sheets, psychriatric assessments by the Social Services Mental Health team etc etc. Effectively build a case to present at the CHC Assessment or Funding Appeal.
In the end we got all care fees paid under CHC, 11 months in a BUPA home at £1100 a week. Its a long battle though with lots of hurdles. Good luck.

Good advice, Chris. Just to clarify regarding the actual scoring, though: Take a look at pages 14-15 of the Decision Support Tool: https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/213139/Decision-Support-Tool-for-NHS-Continuing-Healthcare.pdf. It says:
“A clear recommendation of eligibility to NHS continuing healthcare would be expected in each of the following cases:
• A level of priority needs in any one of the four domains that carry this level.
• A total of two or more incidences of identified severe needs across all care domains.
Where there is:
• one domain recorded as severe, together with needs in a number of other domains, or
• a number of domains with high and/or moderate needs,
…this may also, depending on the combination of needs, indicate a primary health need.”
I have known people receive CHC funding without any Severe scores, just with High and Moderate. Keep going if you can.

Well today we had the CHC assessment. The Multidisciplinary Team (MDT) consisted of the assessor, social worker, ward sister and me. Do I need to say that the recommendation is that my mum isn’t eligible? I’m going to assume this was done in a fair and open manner. Just to recap my mother (87) has the following conditions:
Type 1 diabetic for 65 years (Blood sugar very high usually in the low or high 20s).
Currently has either delirium or vascular dementia or both. She’s a little better at the moment but poor cognition generally.
Osteoarthritis
Poor mobility (High)
Doubly incontinent at night
Blind in one eye, partially sighted in the other. Registered blind.
Plus a few other things.
We went through the 11 domains but nothing was included in 12. I suggested that her sight, blood pressure, and other things be included but although I think my comments were recorded I was told this had all been noted in the other 11.
I’m probably being naïve here but I think of it this way. Prior to hospitalisation my mother looked after herself at home. The only reason she requires a nursing home is (mainly) because she cannot look after her own health needs anymore because of the dementia/delirium problem. These are surely primarily health needs not social needs? I don’t consider the compartmentalisation of her needs reflect the overall situation.
I was told that although her blood sugar was very high it was nonetheless stable and predictable. I had considered her diabetes situation would be considered at least severe but it only got to High. Her cognition has improved over the previous 3 weeks so this too is now considered stable. I have said I intend to appeal but do I have grounds? They will include a list I had prepared of her various conditions with the DST but I can’t think it will overturn their recommendations.
We will be recommended for the £112 nursing care which I believe will mean she’ll be paying in the region of £500 per week. Reasonable compared to many homes I think. I wonder if it’s worth using a solicitor or whether the cost will outweigh the benefit.
Any advice would be most welcome.

My mum lives in a residential care home; she has been assessed for CHC and we are waiting for a decision. The care home manager has advised that if the result is positive she will need to move but my understanding is that she could still remain in the residential setting she is at currently if they can meet her needs (which are not nursing). Also at the point of discharge from hospital 18 months ago no one advised that a CHC checklist/assessment could be done. The hospital and Social Worker advised that I would need to find Mum a residential setting as she was assessed to be not able to live independently at home (which I did agree with due to dementia and risk of falls). I have subsequently had to pay a top up fee and Mum contributes via pension. If the CHC assessment is agreed can I ask why it was not done 18 months ago?
Thanks

I argued against a refusal for CHC and recently had the CHC appeal found “Agreed Eligible” by the local MDT team.
They now request the copy of the care home invoices my father had to pay to reimburse the care fees. Fair enough.
But they now ask for evidence of income, pensions or retained benefits by the DWP. I believe that CHC / Disability Living Allowance (DLA) funding was not affected if care was by a qualified nurse(s), although, after my father’s death we received a repayment claim of DLA from the DWP which we repaid. This was more or month less the period of the CHC funding.
He also had income of state pension, war pension and a private pension as income. I dont believe these are anything related to CHC funding repayments.

I cannot find any info regarding this. Can anybody answer:
1. Benefits means tested in conjuction with CHC?
2. Does care have to be solely by nurses to get DLA under CHC? Registered nurses gave his medical care and care assistants the personal care, feeding, bed changing, walking etc but CHC isn’t for personal care. Should the DLA been repaid?
3. I assume I just need to show the care home invoices and repaid DLA to get my reimbursement? Nothing else needs to be considered.

Can anyone help me please. Unfortunately, my mother died on 18/03/2016 and both my sister and I have felt for the past 2 and half years that my mother should not have been made to pay for her own care.
When she was alive her independent living reached a crisis point and due to a number of risks she was admitted to a local Nursing Home (mother had vascular dementia). She settled very well and after a full review it was deemed that mum should stay in the home permanently. She was not given a choice in the matter and it had also been decided that no further care could be given to her at home to keep her safe as she begun wandering in the night and started knocking on her neighbours doors asking for help to get her home! So as a consequence due to the reasons I have said she was admitted on a permanent basis.
At this point mum was handed over to the Social Workers to sort out, and mum was not even considered for CHC she was immediately assessed as a person who could pay for her own care. During this period her private and her old age pension were taken off her to pay towards her fees as she could not be forced to sell her home as it was not bricks and mortar she owned a Park Home on a permanent site. We asked if we could rent her property out and the Park owner said no the only people who could move in rent free was one of her next of kin. We could not do this and after a year of no one living in her home we had no alternative but to sell the property at a loss. At which point we then became liable for mums fees and have paid ever since.
My point is no one even talked about her primary health care needs, the only thing we were told at the time was she would not meet CHC as her nursing care would not meet the criteria. I do feel it is very much a post code lottery as to whether our relatives get this CHC and again feel why should she have been made to pay when circumstances dictated that she could no longer live on her own surely this is a major primary health need??
Her Social Worker did think that mum may meet the CHC and arranged after 6 months of waiting for mum to be assessed, although I do have to say the manager at the home kept saying she did not think mum would get it. When she was assessed she was declined, even though she was doubly incontinent, was beginning to lose the ability to eat on her own as was actually at risk of choking on her food, had no idea who we were and was in congestive heart failure and was completely unable to dress or undress herself.
I am seriously considering trying to get her fees back retrospectively, but have no clue how to do this or who to approach to help us. Can anyone help please?
Thank you

Jacki – I imagine it’s been a difficult time. A few points: not being able to live on her own does not automatically make someone eligible for full NHS funding. Instead it’s about the whole picture of actual day-to-day care needs. Sadly it’s not unusual for people within the care system to declare that a person is unlikely to be eligible – before an assessment has even been carried out. It’s quite wrong. Write to the Continuing Healthcare team at the Clinical Commissioning Group – NHS – where your mother was based and say that you believe she was wrongly charged for care and that you would like a review.

My mother went into hospital under a section 2. She has vascular dementia and constantly hears voices in her head and is very paranoid. She had harrased the neighbours at home and attacked one prior to being sectioned. Her section 2 ran out and they are now putting her on a deprivation of liberty order and keeping her in hospital.

They said she will never be allowed home and will have to go to an EMI nursing home. Continuing Healthcare (CHC) assesment has never been mentioned and none of the hospital staff seem to know anything. She dosn’t have a social worker. Would she be eligible for CHC?

Hi, sadly my older brother attempted suicide last Sept and was found by his neighbours. He has survived the incident however, after months of tests, CT and MRI scans, the outcome was brain damage and a mental capacity assessment of 0%. He is now 24/7 reliant on care and will no longer live independently again. He was assessed and accepted for full CHC funding and I finally got him moved to a care home local to me (he lived in Wales). I am in the process of going through the court of protection application to become his deputy as he is unable to communicate, move, sign anything himself. I have been chasing the hospital for his medical assessment (via a solicitor as I am unable to request this myself!!) so this is holding up the process. I have just had the visit from the DWP representative meeting at the care home to assess my brother’s abilities and to take down all relevant information according to his financial status/assets. He doesn’t have much saved but he does own his own house, not of a huge value in Wales but it is his. The DWP representative told me that once the house is sold the NHS will require the proceeds to be paid back to cover his care retrospectively. Is this true once he has been given full CHC funding? I am at present, unable to do anything with the property other than pay the ongoing bills (as I cannot cancel these services until I am legal deputy). No one is living in the house and it is 2.5 hours away from where I live so local neighbours are looking after it for me/him. So I am already paying bills and solicitors fees to help try and sort out his affairs. I’d like to know if the proceeds from the property in future will be taken by the relevant authorities. Thanks for any advice in advance.

Fiona – if your brother is receiving Continuing Healthcare (CHC) funding, then he doesn’t have to pay anything – or pay anything back – for the period of time he’s receiving that funding. It raises the question why the DWP are asking about his finances; if he receives CHC, his money and assets are irrelevant. Is your brother now in England? Keep in mind that all the information on the Care To Be Different website is for the CHC system in England, rather than Wales. You may find this AgeCymru factsheet helpful for Wales, though: http://www.ageuk.org.uk/Global/Age-Cymru/Factsheets%20and%20information%20guides/FS20w.pdf?dtrk=true

Thank you Angela for confirming. He is being funded by the Wales health authority. Once the CHC funding was confirmed I was required to research/find a nursing home suitable. I did this independently as it was too far for the social worker or discharge nurse to be involved directly other than on the phone with the homes i suggested. He stayed in hospital whilst I did this as it took some time and I was no medical expert when needing to explain his condition. The hospital wanted to move him to a home in Wales as a temporary measure but as I was close to finding and securing somewhere local to me, fortunately he didn’t need to be moved twice. I’m all he has and thus I needed him moved near me so that I can see him on a regular basis so he knows he is not alone. I’ve read the document you attached and it is most helpful. I belive the relevant LHBs (Wales and England) were involved in discussions when making the funding decision. This has helped me understand that should the DWP mention assets again in relation to obtaining any proceeds I can at least be equipped to challenge it. Thank you

My mother is receiving funding for day and night care at home, funded by CHC. The same care agency is providing both day and night care, I have been informed that under the local Clinical Commissioning Group (CCG) rules the same care agency must provide the day and night care, you are not allowed two different care agencies
to provide day care and the another night care. If you are not satisfied with night care element of the care package, you would have to change the agency to provide for both day and night care. What is the rationale behind this rule?

It’s difficult to say at this point. It would be worth asking the CCG for a written copy of the ‘rules’ they’ve drafted about this. If they can’t produce anything in black and white, I would be suspicious of their statement.

Thanks for your help so far with your comments above. I am doing some research on the points I can use to appeal the refusal of CHC funding for my mother. Among other things, I think I have grounds on the basis of errors in the procedures regarding the assessment documentation, and I would really appreciate some advice.

A Nursing Assessment was done at the same time as the Checklist and was referred to at the DST meeting (I asked for a copy after the Checklist meeting and before and during the DST meeting but it was refused). The other input to the meeting was via information held on the District Nurse’s laptop and oral statements from the Care Home Coordinator, a Social Worker and myself.

Reading the Framework, I had thought that a Multidisciplinary Assessment should be completed prior to the DST meeting and then used to inform completion of the DST. It would then be in such a format that it could be used to assist with planning my mother’s future care needs.

Am I correct in my reading of the Framework? Should a written Multidisciplinary Assessment be produced before the meeting or is it OK to be done mainly orally as part of the DST meeting? Do I have grounds for appeal on the basis that insufficient information was available to make an informed decision?

If you hold a power of attorney for your mother, Keith, you should be given access to the nursing assessment and all assessment notes relevant to the Continuing Healthcare process. The members of the multidisciplinary team (MDT) should have knowledge of your mother and should have gathered a whole range of evidence to help them discuss and review the 12 care domains in the Decision Support Tool (DST) and to be able to make a funding recommendation – taking into account input from all at the actual assessment meeting too, including you. Which page/paragraph of the National Framework are you referring to when you mention a ‘written MDT assessment’?

Thanks for your reply, Yes I do have a Power of Attorney but still couldn’t get a copy of the Nursing Assessment before the DST meeting!

In our case the DST meeting was poorly informed and I think the is why – the following I think says I should be expecting an assessment to be done prior to the DST meeting – and that I should get a copy of it before the meeting.

Firstly on the DST form, the second box on the form asks for comments on the “Individual’s view of their care needs and whether they consider that the multidisciplinary assessment accurately reflects these”.

And from the Framework:-
The Decision Support Tool should be used following a comprehensive multidisciplinary assessment… Para 79
The multidisciplinary assessment that informs completion of the Decision Support Tool … Para 80
The Decision Support Tool is not an assessment in itself… Para 81
The multidisciplinary assessment should be in such a format that can also be used to assist the CCG and LA to meet care needs regardless of eligibility for NHS continuing healthcare. Para 82

And in the Practice Guidance section PG28.1 lists the elements of a good assessment, and PG29 list the potential sources of information input to the assessment.

Hi Keith – sorry for the late reply. The multidisciplinary team (MDT) assessment is the actual meeting at which the Decision Support Tool (DST) is completed – and to which you should be invited. Does that help?

Hi, so much has happened over this last week, sadly my mum died on Monday, but, we are continuing to fight our battle.
We have now been given a date in July to appear before NHS England’s appeal panel.
The CHC yesterday approached the care home for yet more information and records, which as I understand it is because the IRP are questioning them on why there are major gaps in the information they have provided.

Mum died as a result of aspirational pneumonia, she had been on oxygen both via a mask over her mouth and tube in her nose for 24 hours a day for all 10 days thst she was in the hospital before she died.
Yet less than 10 weeks ago, we had a meeting with the lead CHC and the district nurses who said that mum was at low risk of aspirating and was not at end of life and did not have a rapidly deteriorating state if health, this was in complete contradiction to the hospitals diagnosis following 3 strokes which mum sustained in January.

I am devastated thst mum has gone, watching her die over these last 10 days was truly dreadful I am also so so angry thst these so called professionals got it so wrong.

I hope justice prevails in July, and I am now raising a complaint against those who made the decision that mum was not st risk and was not at end of life.

Can anybody tell me what the London Heath Needs Assessment is and how I can get a copy, apparently, one had been requested from our CCG by NHS England as part of the appeal process.
I have tried to find it on the web, but, cannot access it.

It’s a form some London health authorities, including hospitals, use to record health needs. However it doesn’t do away with the need to use the official Continuing Healthcare (CHC)forms in CHC assessments – the Checklist, the Decision Support Tool or the Fast Track.

I represented my mother at her DST multidisciplinary meeting yesterday – and was very glad I followed your advice and spent hours swotting up on the Framework beforehand…

I had some complains about not being able to see some of the documentation used by the meeting (the nursing assessment was on the district nurse’s laptop, etc.), and I registered my disagreement with the score on one of the domains, but overall it seemed to me a professional assessment and I was given the opportunity to contribute my views – and a couple of the scores were higher than I had been aiming for.

We ended up with 1 Severe, 3 Highs, 3 Moderate, 1 Low and 3 No Needs. (The Low was the one I disagreed with as I thought should be a Moderate, as incidentally did the District Nurse on the CHC Checklist 2 weeks ago.)

I was allowed to stay in the meeting during the decision making part of the meeting and the coordinator/assessor said her view was that we should have NHS Funded Nursing Care but not NHS CHC. The other MDT members (Social Worker, District Nurse & Senior Care Home Carer) all agreed without much comment

I objected and asked for a detailed explanation of why this decision had been made and, to give the assessor her due, she spent a long time explaining how she had come to the decision, the essence of which seemed to be:- given that we have 1 Severe, then the High and Moderate domains are then considered for complexity, frequency, unpredictability, and then a professional judgement made.

I had read the Framework (Page 29 Para 88) which states that “Professional judgement should be exercised… to ensure overall need is correctly determined” and “The tool is to aid decision making in terms of whether the nature, complexity, intensity or unpredictability of a person’s needs are… a primary health need.”. The Practice Guidance (Page 76 para33.1f) also addresses the decision making process but seems to merely restate what is in Para 88 without expanding on it.

This is where I have a problem. I understand something about the scoring system and was able to argue our case successfully with that, but when it came to the decision, I didn’t have the understanding or “professional” knowledge to challenge the outcome.

I am now wondering if we should appeal but am not sure how to argue the decision and I can’t find any other material to learn about the decision making process. After reading over 200 pages of documentation I am left with no real explanation of how the most important aspect of the process works! If the decision really is such a “black art” how do we get to understand it in order to either agree with it or to challenge it?

Any thoughts or pointers to material to read would be very gratefully received!

Keith – a few points: I’m glad you were well prepared. That really is essential in such assessments.

It’s not unusual for the social worker and others in an assessment meeting to simply agree with the NHS lead assessor, without offering proactive views; and yet it is vital that anyone from the local authority (i.e. the social worker) is proactive. The process seems open to subjective interpretation by assessors, as you have discovered, and this is why the local authority must play it’s part in pushing the responsibility for funding onto the NHS if the care needs are beyond their own legal remit: http://caretobedifferent.co.uk/nhs-continuing-healthcare-should-social-workers-be-involved/. You’ll need to pick apart the notes in the Decision Support Tool, and pull together your comments and observations about everything you feel was done incorrectly during the process. This may help: http://caretobedifferent.co.uk/appealing-a-continuing-care-funding-decision/

Hi, we have been fighting for CHC funding since Feb 2015 and keep being declined, even when mum was returned to her care home in Jan 2016, following a stroke, followed by 2 more after her discharge, she was then found on the floor having fallen out of bed, and had been sick and was choking on vomit.
It was only then that a Checklist was carried out, without our knowledge I may add, and despite repeatedly telling the nurses and the CHC lead, that mum’s health was deteriorating rapidly and she was sent back as end of life care, we were once again ignored and told that she did not qualify.
Last Friday mum was found unresponsive in bed, rushed to hospital and now, we are told that she is dying nothing can be done, her chances of recovery are extremely slim.

We are going to continue to fight this, as we are waiting for a date to attend a panel meeting with the IRP, but I am so angry that these people have got it so wrong.

As mum is in hospital and cannot be moved, the hospital have said that she cannot be fast tracked until she is discharged again back to the home for end of life care again, but that may not happen as she is so ill, she may have to end her days in hospital.

How very distressing, Barbara. If your mum is still paying care fees for her care home place while she is in hospital, then I can see no reason why she should not be Fast Tracked now. She may not need to be paying those fees. Given her current state, it seems unlikely she is within the local authority legal remit for care.

My aunty died in 2007 and I’ve just gone through the assessment. They turned us down saying my aunty didn’t have a primary health need. The panel confimed that health and social care had a shared responsibility to meet the care needs of my aunty. Generally, health needs would be met by local social services and the funded nursing care contribution for those people in nursing home accommodation. The CCG has ratified this decision. My aunty only lived in the nursing home for 1 yr befor she passed away. I’ve only got till 18 may to appeal their decision. I think my aunty did fit some of the critera and has been under marked. I dont think risk assessments had been done but I’ve no proof. She was blind, had falls, bed sores, skin conditions, Alzheimer’s where she would hit other patents, be confused, etc. She had no appetite. She had to be turned in bed and hoisted at the end. I would like to know how they can assess some one who’s dead and who they didn’t know?

Hi. A nurse came today and did a checklist for Jean, she only scored one A and two B’s the rest were all C’s, we didn’t totally agree with her as Jean is unable to do anything for herself apart from eating, but the nurse seemed quite honest and fair in how she saw things. Will this qualify Jean for an assessment? Also the nurse phoned later to ask if Jean had over £23,000, is this all correct? John

Just wanted to share my little bit of good news with you. I have been trying to get funding for my mother since 2010 and I am sure I dont need to tell you how hard this process is. I have fought to within an inch of my life still to be told that my mother only has social care needs, despite having Alzheimer’s and little or no cognition, doubly incontinent and suffers from a bad chest. Late last year I decided enough was enough and took my case to the Ombudsman as I have been treat appallingly by the CCG and I know that they haven’t followed The National Framework along with numerous other issues. The Ombudsman came back to me to clarify certain points of my complaint and to simplify it I sat down and put together a timeline of events and any key issues I felt needed addressing. I spoke to the Ombudsman again a couple of days ago and they agreed that the CCG have not followed procedure and have instructed them to send the case to an IRP which has never been offered to me. Its still a long way to go but I am over the moon that someone is one my side finally. DONT EVER GIVE UP!!!

Helen – Continuing Healthcare funding is not dependent on where a person physically lives (i.e. in a care home, at home or elsewhere), nor is it dependent on the qualifications of the person delivering the care.

My mother who is over 100 but mentally sound went into hospital last November with an infection. Until that point she had been living at home with carers coming in for half an hour mornings and evenings. She was eventually discharged from hospital in February. Prior to discharge she was assessed as needing 24 hour nursing care but, following a reasonably fair assessment, does not qualify for CHC. She is now in a care/nursing home and the NHS are paying the care home £112 a week for the nursing care, she is self funding the rest. It is not apparent to me what nursing care she is receiving. She is blind, cannot stand on her own, needs help to get to the loo and needs to be fed all of which tasks appear to be carried out by carers not qualified nurses. She didn’t have pressure sores when she went in to the care home but I believe she does now. The only medication she takes is one asprin per day. She is unhappy and wants to go home. She could just about afford to fund a live in carer but not a qualified nurse. If that carer is not a qualified nurse will the NHS continue to pay towards her care if she goes home?

Helen – the Funded Nursing Care payment of £112/wk is only for people in nursing homes, however full Continuing Healthcare (CHC) is available regardless of where a person is based, i.e. the person can be at home, in an ‘ordinary’ care home or in a nursing home. You can ask for your mother to be reassessed for CHC if her needs change, and you can appeal any aspect of the previous CHC assessment you may have been unhappy about. Nursing care does not necessarily need to be delivered by people with nursing qualifications.

Hello
My Mum broke her hip 8 weeks ago, spent 2 weeks in hospital and was told 6 weeks in respite, this time is up now and she is no further on, they only give her physio twice a week and the rest of the time she just sits in her chair. My mother is now incontinent since going in the home but wasnt before she left the hospital, , twice they have had d&v in the home she resides in and we where not allowed to visit. We are desperate to get her home but because of her incontinence its not possible, what kind of help would we be able to receive and what funding to help us as we all work during the day and of course on a night we would be worried about her on her own?

My mother died in 2013 aged 96. Up until 2012 she lived alone in sheltered accommodation which she partially owned. She had been diagnosed with dementia was partially sighted and deaf, she was admitted to hospital after a fall, and because I did not hold power of attorney over her welfare, social services decided she should be placed in a care home. N.H.S. Continuing Healthcare was never mentioned at that time. I later discovered this and made a claim, which has been turned down because mother did not have primary care needs and was settled. Scoring – they based their decision on what care notes that could be located, but many are missing both from the care home and various bodies within the N.H.S. I would greatly appreciate any advice on how to proceed.

My father has been told that he will only receive payment from the NHS for his nursing needs despite scoring Severe in both mobility and nutrition, together with other nursing needs, e.g.- sores. He has been told he will need to pay the fees to stay in the nursing home. This does not appear to be correct from what I have read. Can you help?

I am continuing to battle on to get this funding for my mum, but, it is like 1 step forward and 3 back.
I have a question, if anybody could help that would be great.
I hold an enduring power of attorney for my mum, and I am trying to obtain all the information that the CCG and the CHC team are sending to NHS England in support of their continued refusal to fund mum.
I am being told that I need a separate power of attorney for health and welfare and without it I cannot access the information that I am asking for.

I want to make sure that the CCG and the CHC are being above board and not changing anything that they have previously used, as they have made untold mistakes so far.

I obviously cannot now obtain this other power of attorney as mum has no mental capacity, do you know whether I could get the information via the freedom of information act.

Hi, I have an 83 year old mother and it has taken us 3 years or more to get a diagnosis of dementia. She has now had to go into a care home (which she is fully funding) after a six week spell in hospital due to a severe episode of confusion and a trial period of six weeks with a reablement team at home which only lasted 2 weeks as it left my mother at risk. She has other health issues. The family are very upset and are in the process of complaining to the health board if she had been diagnosed earlier she would have been able to have medication and would still have been able to remain in her home. We think the NHS should be paying the fees.

Hi Angela, she is in Wales. I am in the process of obtaining medical documents etc via the health board as I have a Lasting Power of Attorney health and welfare. Do you suggest to get an assessment for NHS CHC next. Who is the best proffessional to carry out this as have already mentioned this to social worker who said Mum didnt come in the criteria.
Regards and thanks
Kim

Hi Angela Thanks for your reply. The lady was referring to the NHS when she said they have to care for Jean. No, Jean does not receive Continuing Healthcare funding. I have asked the question whether she should receive funding as you suggested and after several phone calls and mislaid information the Social Services have agreed to do an assessment of Jean’s care needs. Unfortunately the assessment will not happen until after Jean has been into respite care so she will have paid for this herself but hopefully will be able to claim the costs back.

If you can get the Checklist done prior to the respite care, that would be good – although I realise that may not be possible. Be sure it’s the Checklist assessment form that is used (for NHS Continuing Healthcare). You are entitled to be there at the assessment and input information and views. It’s always a good idea to be there, to make sure things don’t get ‘overlooked’. If Jean gets a positive result from the Checklist, she should then be referred for a full assessment for NHS Continuing Healthcare. If she’s successful in that, funding will be backdated to day 29 after the completed Checklist is received by the NHS, so the sooner it can be done the better.

My partner Jean suffers from Parkinson’s and dimentia, she is unable to do anything for herself though she can eat her food but takes a long time to do so, I am listed as Jean’s full time carer, my query is regarding a Hernia operation that I’m due to have, the hospital tells me that as they have informed me I must not lift Jean or anything for six weeks they have to take over caring for her and the NHS has to pay for respite care. Social Services tell me this is not the case as we do have over the financial limit of £23,000. Could you please advise me who is correct. Thanks John

Does Jean receive Continuing Healthcare funding already, John? If she does, the NHS should continue to cover all costs of care while you’re incapacitated. If she doesn’t, then the first question to ask is whether she should do. The local authority/Social Services have (rather typically) asked about money first; but what should come first is whether or not Jean’s care needs are beyond the local authority’s legal remit. if they are, the NHS must pay – and Jean’s money shouldn’t come into this at all. (Also, remember at all times that it is only Jean’s money that should ever be means tested, and only her share of any joint money/assets. Your own money/assets should not be touched. But this is only relevant if she does genuinely have to pay for her care.) When you say “they have to take over caring for her”, who is ‘they’ in this context?

Firstly, can I say yet again just how invaluable your book is. We have been through the ringer, as have many before us in trying to get the funding thst mum should be getting.

Our case has now been referred to NHS England, but it had been months now with resolution meeting in between and we are no further forward.

The CCG had said thst they would have all paperwork in by last Friday, in order for us to proceed, but, surprise surprise, on Wednesday they informed NHS England that they still did not have all of it and are looking at up to another couple of weeks.

Today I got a phone call from the care home to let me know that the CCG had been in on Friday asking lots of questions about mum and took away her records for the period which they last assessed her.

They already had this information as the period in question was only in December 2015.

Is there anything I can do to stop all these needless delays? I also wonder if they are trying to backtrack and cover up all their mistakes.

That’s so frustrating, Barbara. It wouldn’t surprise me if they are trying to backtrack to cover up mistakes. I’ve seen that before. One option is to go to the press – or at least tell the CHC team you are going to do so – and then see how quickly they get their act together. Just a thought.

Thank you for your website and e-book, they really are a haven of common sense advice in the confused world of NHS CHC.

My mother is 96 and has been in a care home for almost 2 years. A CHC checklist was completed on discharge from hospital 2 years ago and she missed being put forward for full assessment by 1 score. Her care needs have increased since then and her doctor thinks that a CHC checklist should now be completed again.

This has raised some worries about her being able to continue in her current care home if she gets the CHC funding. She is self-funding and very settled in her care home but it is more expensive than most in the area. I understand from your website that topping up CHC funding is not allowed.

If CHC funding is agreed, would it cover the cost of her current care home? Does the NHS fix a cap on care home rates? Is it a matter of negotiation with the care home to accept the presumably lower rate paid by the NHS? Could you give me some advice on this please?

Thank you for your very kind words, Keith. I’m so glad the website and book are helpful. Regarding your questions: There is no cap on CHC funding. It’s worth asking the current home whether they have – or have had – any residents with CHC funding. If they have, then the NHS can’t argue they won’t pay for that home. If the CHC payments are not enough for the care provider, this is something that the care provider and the NHS must resolve, because the CHC funding is an arrangement between those two parties. On what basis did the doctor think your mother wouldn’t be able to stay in the current home?

Angela, thanks for your advice, it’s much appreciated. I guess it will be another discussion with the CCG and care home, if indeed we get to that point. We have a long way to go with first the checklist assessment and then the full DST assessment, etc., etc…

I wasn’t very clear about where the topping-up issue came from; it wasn’t the doctor but only with her relatives – worrying about what we should be worrying about!

I am hoping for some guidance. I am severely disabled with MS (doubly incontinent, full hoist transfers). First checklist hurriedly done via telephone…negative. Redone in person….easily positive. Submitted to CCG on 20/1/16. I was admitted to residential rehab unit for the next 5 weeks the following day. Despite this being the ideal location for a MDT assessment, this was not done by CCG, even after several reminders. Physios had given up on me by week 3……’it is clear that you will never reach your goal’. Discharged back home to the care of my partner, who sadly physically abuses me with increasing frequency due to the stress of being my sole carer (not deliberate, but frequent injuries caused by ill tempered manhandling) The rehab unit was well aware of the home situation, and set up a ‘safeguarding’ thing. It is now 55 days since the CCG receive my checklist, and still I have no date for the MDT assessment, at which I will be represented by people who I have never even met, let alone know my needs. I am now at my wits end.

Sally,
Have you tried your local MS/Disability charity? And although it sounds as if NHS CHC should be awardable, are the local Adult Care Social Workers also aware of your home situation? They are under an obligation to provide assistance too. After all, if you are refused NHS CHC they will be expected to take over those aspects of your care that you cannot meet for yourself. Sorry you are getting bashed about a bit. By safeguarding thing did you mean the council social workers are already involved? They should have planned some reduction of the stress on your partner ASAP. Perhaps you need to chase them.

Sally – if you have phone close to hand and if you ever feel in danger don’t hesitate to call 999. As well as keeping you safe, this may also ‘encourage’ the health and social care authorities to take your situation more seriously and also to look at the (seemingly clear) likelihood of ‘carer breakdown’. Regarding the delay in the in the CHC process, this is sadly not unusual. However, that doesn’t make it excusable. You may want to contact the Head of Adult Care at the local authority and stress that the local authority is almost certainly in an illegal position right now – by not having passed responsibility for your care to the NHS. I hope that helps.

I need a bit of advice. Mum has severe dementia and is currently in hospital under section 3 and we have been told by social services that sec 117 applies. Mum needs 24hr care and we are currently looking for a care home that meets her needs. We have been told by social services we will have to pay a top of fee of £125 per week – is this right? I was under the impression that that all her care home fees will be paid for?

Hi i need a bit of advice if possible, My partners nan had a fall and broker hip 4 weeks ago she has since been in hospital as we have been informed she cannot return to her care home as she now needs nursing care and they dont have a bed for her, so we are in the process of finding a new nursing home for her, however my father in law is still having to pay her fees is this correct??
thank you

I’m after some advice if possible. My Gran has recently been in hospital for a few weeks and had to have 2 operations, one to open up her blood vessels to allow better circulation and one to fix a fracture due to a fall as she is very unsteady on her feet. She is partially blind and diabetic (Insulin dependent) she is also virtually completely incontinent. The hospital had refused to release her to her own home due to her needing full time care and needed to go into a home. They referred my Gran to social services and family members were given a list of only 3 care homes to visit. She has now been placed in a home (Which doesn’t cater for her exact needs) which she has to pay £1300 per month. This has taken her DLA and all pensions she receives. Should she have been assessed for CHC? If so, how do we go about sorting this out as the home she is in is in my opinion is awful.
Any help would be much appreciated, Thank you.

My mum has severe dementia and currently in hospital due to an operation because of a fall. Insisted on CHC checklist and she scored 2 A’s – although we think should have been other A’s – although,still enough to generate a DST. Prior to this she was in a care home self funding having failed a DST a year ago. Waiting for result of appeal on that one. Now, no DST has been done in hospital as yet and they want to discharge her back to care home before doing it. Care home said they won’t do the DST but are happy to have her back. If she goes back to care home can we insist on DST? Discharge nurse said to me she won’t score enough anyway so no point! I have seen her hospital notes and doctor recorded her health condition as dementia, depression and osteoporosis. She scored high risk for falls and high risk for nutrition on their notes. Shall we insist DST done before discharge?

Today mum was seen by the O/T, as part of the 3rd reassessment for CHC, as she generally becomes agitated during personal care.
However, she did not on this ocaission become distressed and now we are told that this msy be due to the recent strokes which she has suffered, as they have caused deterioration in her ability to associate personal with fear.
This area of scoring was a major issue of discrepancy, but, she does react frequently during this process, how on earth do we prove this now, the care home staff have told the assessors, but, without it being witnessed it is our word against theirs.

Barbara – the care staff should be documenting everything in writing in the daily care notes. If they aren’t, you’ll need to take this up with them, as this is a serious omission. The daily care notes and the care plan are vital in the NHS Continuing Healthcare assessment process – and in looking after your mum safely, of course. The CHC assessors also should not simply ignore the inadequacy of the notes – especially if the care staff have effectively admitted that your mum gets agitated and yet it is not documented. The care home could put something in writing to the assessors perhaps.

My husband has been award CHC and I have been told that his care will be funded equally by social care and health. I do not really understand how this will affect his care. He is cared for at home and has advanced young onset frontal lobe dementia. I feel that his current care is not skilled sufficiently to care for his increasing needs particularly around feeding and skin care. I thought CHC involvement would help secure a standard of care that could meet his health needs. If this is not the case why award the funding or is there a point when he could be fully funded and the care upgraded to meet his increasing health needs. Are there different levels of funding for CHC? During the application process I was led to believe that CHC would help to deliver health care as opposed to general social care. To put my concern into context his main carer is just 19 and has worked in the care system for 4 weeks!

I generally advice people to be suspicious when Joint Funding is suggested. Although there is something called Joint Funding, if your husband qualifies for CHC, then that should cover all his assessed care needs. Any joint funding involves the local authority, and of course that part of the care is means tested. If your husband scored highly enough in the assessment process to be eligible for CHC, I would question why the local authority is now involved at all. Receiving CHC funding does not, unfortunately, mean the quality of the care your husband receives will be any better; it just means he should be funded, and the NHS will almost certainly want to do that at the lowest possible cost. I can understand your concern about the main carer. The care that is provided must cover all assessed are needs, whatever those are. You’re correct that CHC delivers healthcare, as opposed to just social care, BUT when a person is eligible for CHC, the funding then covers healthcare AND social care needs.

Sue May,
I go with Angela on this. It seems wrong that a person can qualify for part of NHS CHC funding, when the eligibility criteria and the assessment is designed to establish beyond question, a ‘Primary Health Need’. And a further test is to establish if the totality of the care is beyond the legal remit of a council to provide. I have never understood how there can be any split in responsibilities. Unless of course there is collusion to enable some money saving for the NHS by recharging some of the cost via the county council.

Hi again, this site is invaluable, so, a huge thank you for all the advice so far 🙂

My battle for funding goes on, having been denied twice, plus, denied fastrack, with all the problems in between, not to mention pointless meetings, here we are preparing to face a panel at NHS England.

At our last meeting 3 weeks ago, assessments were requested by the lead person from the panel, from an O/T, Speech and Language therapist and a dietician.

The O/T spoke to me yesterday to say that she had seen mum again and thst she did not show any distress whilst being hoisted, which is one of the areas that was in question, she us returning next week to see mum receiving personal care, but, if mum is having a reasonably good day and foes not display the signs thst she usually does, things will go against us.

How do we prove that she is not normally calm during these procedures?

The staff have told the O/T how mum is as have we, but, they persist in carrying on.

Mum’s weight has caused much concern by the hospital and the home, but, the lead of the panel insists thst she is stable.

We feel as if we cannot win, all the powers thst be seem to band together and back each other up, any advice please, as yo how we can strengthen our case

I’m glad it’s helpful, Barbara. Make sure you state lots of instances that show your mum’s needs – even if the OT happens to have seen her when she did not display these needs. I suspect you will have many more instances than the OT. See if you can get something in writing from the care staff perhaps? Also, being ‘stable’ doesn’t mean your mum should automatically be discounted for funding: http://caretobedifferent.co.uk/continuing-care-assessments-2-frequent-mistakes-part-2/

My mother has very advanced MS and having worked through the online tool, she would be eligible for CHC. I requested a CHC assessment for my mother back in May, it took about 4 months before I successfully managed to get the social worker out for the initial assessment, and despite the fact that NHS and social care are meant to be doing joint assessments now, it was another few months before the nurse came to ask the same questions of my mother and her live-in carer who we currently pay for. It is now February and I have had nothing from the nurse about when they will complete the next part of the assessment despite my requests for an appointment to at least be made. Most the time she does not respond to my emails. How long should this process take from my initial request for an assessment and how can I make a complaint if I feel it is appropriate?

Hi Jessica – the Continuing Healthcare assessment process should take 28 days. As you’ve probably guessed, many families report that it doesn’t happen with that timescale. You may want to write to the Head of Adult Care at the local authority, and inform him/her that the local authority is potentially in an illegal position, by not having properly ascertained whether or not your mother’s care is beyond their legal remit. http://caretobedifferent.co.uk/nhs-continuing-healthcare-should-social-workers-be-involved/

I support those individuals who suffer from Mental Illness, most subject to Section 117 of the 1983 Mental Health Act. Where they receive free aftercare/ there is confusion, would you say they should receive accommodation as part of their ‘Care Plan’, and their medication free if they are not in receipt of Income Support? a qualifying benefit?

My mum fell at home just before Christmas fracturing her right hip collar bone; she ended up having a partial hip replacement. After 8 days in hospital she was transferred to a smaller local hospital for rehabilitative care. However the physiotherapy which she needed was a very slow process and one of the nursing sisters after a week’s leave, was shocked at how little progress my mum had made. She now needed a zimmer to help get her walking again + she has COPD and she was more breathless than usual. Prior to her fall my mum was very good at managing her asthma. Anyway she was discharged from hospital 5 weeks after her fall having been assessed by the therapist as needing 4 care visits a day.
She arrived home by ambulance in a frail state and was told by her social worker she would only be receiving 2 visits a day. This alarmed my mum + me and my sister especially as my mum lives alone and it was clear she had become institutionalised. Four days after returning home she was back in hospital with pneumonia which had been brewing before her discharge from the rehab hospital as she was experiencing breathing problems then.
After being in hospital for 9 days she returned home on 6/02/16 and this time with 4 care visits a day. However because of a lack of physio her walking ability is poor; she doesn’t have the confidence to walk with the zimmer when she’s at home by herself. I was informed yesterday by my mum’s social worker there’s a meeting on 1st March with the community matron, a therapist and my mum, and as the social worker found out about this meeting she thought she needed to be there. She assumed that me and my sister were aware of this meeting which we weren’t, and whilst speaking to her I queried the absence of any physio input. This surprised her as she believed my mum was receiving physio from when she was discharged.
We, i.e. my mum, sister and myself have been informed that for the first 6 weeks post-discharge that the care visits are free and after that my mum is expected to make a weekly payment.
My mum had been quite a capable 88 year old woman who looked after herself; she managed her own medication; dressed herself albeit slowly; showered herself daily; was a happy lady; and for a woman of her age had a decent memory. She now is miserable, isn’t capable of caring for herself, unable to walk, and because she is not using her muscles sufficiently, at night she’s too slow to get herself up and on to the commode that she’s ‘wet’ herself and is then laying in wet bedding until the first carer arrives in the morning. This has already happened twice this week.
I think my mum comes under the category for requiring Continuing Healthcare by the NHS + she’s been let down by the NHS by not receiving the physio input she needed from her discharge which is almost 3 weeks ago.
I just would like to be prepared for this up-coming meeting on 1st March. Do you have any advice please ?

My father, a self-funder, has just been awarded CHC backdated to 11th April 2015, a date 29 days after the Checklist was first carried out. The CCG, in their letter informing me (I am his POA) of their decision, have advised the following:-

“If you have paid anything towards your father’s care between 11th April 2015 (date from which funding is awarded) and 29th January 2016 (date from which we have contracted with the Care Home), please send receipts and details of the bank account into which you require any reimbursement to be paid. Please note that you may not receive the full amount that you have paid as we will only refund up to our benchmark.”

It’s that last part that concerns me as that effectively means that my father will have paid a top up to the Care Home for the back-dated period. Indeed, going forward, it would appear that the CHC award will not meet the full weekly cost of his care and that a top-up will be required for him to remain in the Care Home. Is this correct and legal or are the CCG and/or Care Home acting outside their legal remits?

Not sure if you can help, if not perhaps you can advise us where we can get help. A very close friend was diagnosed with early onset Alzheimer’s 2 years ago ( she is a single mum). Her daughter, then 20 years old, was managing the situation mostly unaided. Last November the mental health nurse suggested that the daughter move out as she believed having her around wasn’t helping her mum. The daughter moved out, although very upset at being told to do so. However, this move didn’t help matters and my friend, deteriorated even more rapidly . My friend was recently sectioned and we ( her family and friends) hope that she will be able to move to a care home that we looked at while she was still able to say she liked it. My friends daughter would like to return to her home, however her mothers power of attorney who is also her financial adviser says he doesn’t think he will be able to allow her to return home. My friend has enough money invested to cover 5 years of paying for a care home without selling the family home. Do you know if her daughter, Claire, will be allowed to go home or is the power of attorney correct in saying Claire will not be able to do this?

Hi Paula, This reply may be too late to be If use but I hope it helps. Anyone held under section 3 (normal section) does not need to pay for care. If she is discharged under Section 117 there is a duty to support to aftercare. This is for people detained under section 3 (normal section). Check out with solicitor or Age Concern. Is there any reason the Power Of Attorney (POA) has given that your friend’s daughter cannot move back to her family home? She was told to move out to see if it helped her mother on suggestion of the nurse, it didn’t so she now wants to move back. I feel sure ‘aftercare’ will welcome assistance from a family member as family are so important to mental health patients. I cannot understand why there was a suggestion the daughter should move out and I think this should also be queried as a daughter or family mrmber is vital to someone with mental health problems. As I say I hope this helps. Good luck.

My dad has terminal prostate cancer and has been in hospital for some 9 weeks now. He was originally admitted with a water infection and was hallucinating, which led to a fall at home and the paramedics took him in as a precaution. As soon as the staff knew his illness was terminal they left him in bed with no physio for a month resulting in so much muscle loss he had no strength to even get himself up and out of bed. Now after 9 weeks he is totally bed ridden. He has c-diff which is debilitating to say the least and needs daytime as well as night time care as his pads need to be changed on a regular basis. We have been told there is a care plan in place but it does not cover/include night care which will be a huge problem and our main concern. My brother is dad’s main carer and is more than willing to have him back home (which is what dad would like too) but what I am very worried about is if he is caring for him during the day how will he get enough rest himself if he is being woken 3/4 times during the night. I don’t understand why they think care during the night is not as important or necessary as in the daytime, which to be honest, is dad’s worst time. Although my brother is happy to deal with dad’s ‘little problem’, my dad says he is not as he feels unhappy/uncomfortable that my brother should have to do this. Evidently we need to fund night care ourselves which is very expensive. Before dad was admitted he was mobile, he could manage the stairs, make himself a cup of tea and occasionally take a trip out. We feel the hospital are mainly to blame for dad’s decline in his health because if they had listened to our views in the beginning about getting him up and out of bed to keep him mobile, we wouldn’t be in this very sad and frustrating position today. If someone has a terminal illness you don’t just give up on them no matter what. He could have enjoyed another 6 months or so of normality in the comfort of his own home. In between the 9 weeks he was admitted to hospital, dad was discharged (rather speedily I might add but that’s another issue) to a nursing home but his treatment was appalling and ended up back in hospital after just 2 days! The problem I have now is that the hospital want him out and my brother and I feel overly pressurised everytime we visit dad. The co-ordinator dealing with this just keeps pushing and pushing to get dad out, his health doesn’t seem to be a big issue to her and doesn’t want to listen to how we feel about it. As we have refused to send him back to the nursing home she’s decided to look for a place for dad without our consent and we’ve been given a list of nursing homes further away from where my brother and dad live to view as well. We just dont know where we stand with the situation or which way to turn, its a living nightmare!!

I have an uncle and aunt who have no children. My aunt has been diagnosed with dementia and went into hospital and then into a care home because she had a UTI . My uncle could not cope on his own because he had had a stroke a few years ago.So he went into a care home.Then my Aunt came out of hospital and joined him . I have been told yesterday they can not return home because my aunt needs 24 hour care because of incontinence and mobility problems and they are worried about night time care so they are saying they both will have to stay in the care home and sell their house. Am I within my rights to ask for a NHS Continuing Healthcare assessment ? I am getting power of attorney for both of them at the moment because mentally my aunt is at early stages of dementia – although physically she is suffering more.

You’re absolutely right, Janice. No one should be telling your aunt and uncle to pay for anything until the NHS Continuing Healthcare assessment process has been carrie out – and carried out properly. Make sure they are each assessed separately – as individuals.

Following on from my previous posts please can somebody tell me whether it is OK and normal for one of these Checklists to be completed without the knowledge of either the family or the home.

It states that mum was asked if she would like a family member present or an advocate, this was circled yes and underlined. It also says yes where it asks if she knew that the information would be shared.
However, she was asleep throughout, and can neither communicate verbally or understand what is being said to her.

I do not understand this.
They have also scored her lower in some domains than they did in the full assessment which they carried out in December 2015, yet she has just suffered 3 strokes in the space of 3 weeks.

Hi Barbara – no, it’s not correct for the Checklist to be done behind everyone’s back. It sounds as though the CHC team has falsified information on the form, by stating that your mum was able to answer those questions. That’s a serious breach not only of the guidelines, but also of professional standards/codes of conduct and possibly also the Mental Capacity Act. Ask them to show you a copy of the Mental Capacity assessment. This may help: http://caretobedifferent.co.uk/mental-capacity-assessments/ If they can’t, it’s clear they have falsified the information. It also sounds as though they have deliberately played down your mum’s care needs and failed to address her current state of health.

Hi Angela,
No, we have no problem with the home, they have taken such hood care of mum, ad for fast track, she was declined by the district nurse on the day she returned from hospital, without even completing a fast track assessment.
They say she is eating and can breathe normally, and does not meet the criteria.
On the back of the incident where she fell out of bed, they did a checklist, without telling us or the home, we were not given the opportunity to attend.

It is marked as advocate and individual was informed, despite mum cannot understand or respond to anything.

Hi – I support a gentleman with dementia; he has been awarded CHC however I am unsure as to whether this covers the 28 hours 1 to 1 support he requires a week originally put in place by social services.

The CHC payment should cover all the needs and risks assessed during the CHC process – everything discussed at the multidisciplinary team meeting (MDT) where the Decision Support Tool (DST) was completed.

Hi again,
I would appreciate some further advice and clarification. Mum has been denied funding, we have been appealing for a year now.
The whole process has been a farce, but, we are not giving up.
Mum has score 1 severe, 2 high, and 5 moderates on the DST, but we and the care home disputed 4 of the decisions, which would place her higher.
Mum is doubly incontinent, has a puréed diet, thickened fluids, has had pneumonia/ chest infections in the part, has had 2 incidents of skin breakdown, needs to be hoisted as totally immobile, sustains regular falls from bed, has to be repositioned both when sitting in her chair and throughout the night.
Mum requires an air mattress on the bed and on her chair and the chair is a tilt and space which is a more specialised one than a normal wheelchair.
Mum is unable to communicate verbally, other than to say yes or no sometimes, but not in context to anything sprcific. She recently spent 3 nights in hospital following a stroke, and was discharged back to the care home as end of life/ palliative care, complete with drugs to keep her comfortable if required. Thankfully these have not yet been needed. She suffered a further two strokes after her discharge.
Mum was found face down in her own vomit, and struggling to breath after a fall from bed.
The hospital raised concerns about her weight, stating that she is severely underweight, in addition she suffers from severe bouts of diverticulitis which are unpredictable in when they occur, how frequently they occur and how long they last for. During these attacks her diet has to be modified and it invariably impacts on her weight.

Despite all of this, we are being told that these are not primary health needs, and that to qualify mum would require specialist care via the district nurses which could not be provided by the care staff.
Examples given were, if mum had a pressure sore that was not responding to treatment or she required injections or complications due to diabetes. She is pre diabetic and this is managed through her diet, but we are told this does not qualify.

We received a Decision Support Tool (DST) in March 2015 – 3 years after our application was sent for a Retrospective Review. The covering letter said that there was no need for domain weightings or recommendations at that stage. There were pages of detailed day to day care records. We were asked to give our domain weightings to each domain which we did. The MDP met, (2 people) in August 2015 and decided that my father, who had dementia, Parkinson’s, throat cancer, renal failure etc. was not eligible for NHS Continuing Care. He had a score of 4 High and 4 Moderate ratings although we believe every domain was watered down to ensure that nothing was shown as Severe or Priority to support the non-eligible decision.

We are appealing and have a face-to-face meeting in March 2016. I want to be sure of my facts.

Question: Should there have been domain weightings and recommendations on the DST in March so that we could compare our weightings to the recommendations? I understand that the MDP would have used the DST and the weightings to form their final decision. I believe that it should have. I believe that this would be grounds for the MDP to look at their decision again. Thank you.

Can you just clarify something in relation to my last question please.

Is it the case that, if mum’s score on the DST said that she did qualify for the funding, would that mean that specialist intervention from the district nurses would not be required?

They say that a primary healthcare need is something that needs more than her care home can give her, the examples given to us were, if she needed to have injections, or if she had skin breakdown which was not responding to treatment.
They say that these are things that a residential home could not do and this is when specialist care comes in which in turn would qualify her for funding.

Hi Barbara – a person does not need to receive specialist care in order to be eligible for CHC; so if the outcome of the multidisciplinary team assessment (MDT) and the notes in the Decision Support Tool (DST) show that your mum is eligible for funding, it’s irrelevant whether the district nurse is involved. If your mum needs the district nurse to be involved to meet her care needs, then that’s one thing, but that specific involvement does not determine CHC eligibility. What matters are the overall assessed care needs, regardless of who might be providing that care. Eligibility does not depend on what a care home can provide; it also does not depend on the type of care home – it can be a residential home or a nursing home or it can be care at home. Eligibility depends only on what the underlying care needs are, regardless of what care is already in place. If the care home can’t meet those needs, that’s a separate question that would need to be addressed – for your mum’s safety. What matters always is the overall picture of care needs and risks. There is no specific intervention that has to be provided for a person to qualify, i.e. a person does not have to have injections, they do not have to be on a ventilator, they do not have to be at end of life, they do not have to have pressure sores, etc. etc. They may have these needs, of course – but eligibility is not about any specific diagnosis or intervention. Sadly many families get told a lot of nonsense about CHC – and are persuaded that their relative has to have specific needs. It’s not true. It sounds as tough the care home doesn’t understand CHC.

Hi there. Firstly, great page. My husband is getting NHS continuing healthcare after I found out about it myself a year ago. What I wanted to know is as a carer and wife I would like to have a respite break of a weekend. I would feel guilty and worried if longer. Do you think that this will be paid for by the NHS or would I have to pay for that myself. Everyone is always telling me I need it but never offer a solution so I can get a break.

Hi,
Today, after yet another so called resolution meeting, we were told that, to qualify for chc, mum would have to require the intervention of the district nurses.
Her needs would have to be over and above normal care provided by the care home, but they say that since her last assessment in December, she now needs another as she has now suffered a deterioration in her health.
I do not understand why they consider this as necessary, as how can they say that this may tip her into the qualifying categories but then say she has no health care needs.

What is the point of the DST if she fits the scores but still does not require specialist care.

Hi Barbara – the qualifications of the people providing the care are irrelevant in Continuing Healthcare (CHC); what matters are the day-to-day care needs, regardless of who is managing those needs. Also, it’s the underlying needs that count, not the needs as they appear once care is in place. Your mum does not need to be receiving specialist care to qualify. Also, the CHC process is not an assessment of whether a person’s care is above ‘normal care provided’; that’s nonsense. It sounds as though you’ve been given incorrect information at the resolution meeting, which is sadly not unusual.

Hi, my uncle has vascular dementia. He has been self funding in a residential home for 18 months. He is currently in hospital having had a bad heart attack. He is quite poorly and I want him to return to the care home. They are happy to have him back but I want the hospital to fast track him for CHC. He doesn’t have to be in a nursing home does he? It’s his home, so I’m guessing he’s entitled to CHC funding the same as if he was at home?

Hello – my 40 year old brother has recently moved to a care home nursing bed. Although he has Continuing Healthcare funding (CHC), the care home is rationing or not ordering the items he needs: Swedish noses for his tracheostomy, glycerin swabs for his mouth and adult nappies. When asked, the response is these are “nursing items and not items care homes can order, they are not available via the GP”. His social worker has tried but keeps getting the same reply. But the home has said we can have them if we buy them. Are these items that the family is expected to obtain or are they included in the Continuing Healthcare funding? The care home is charging £2000.00 per week.

Hi Nicole – if your brother is receiving CHC, the NHS should be funding ALL his assessed care needs, and no one else should be asked to pay for those things. It is the care home’s problem, not yours. This also sounds like neglect and/or a safeguarding issue if your brother is not receiving the care/care products he needs.

My dad has Alzheimer’s. Since December we have been to A&E three times. Once from him calling saying if he had a gun he would kill himself. Second having a fall and breaking his arm and third from me not being able to pick him up after a fall. He called police last week because of hallucinations and I had to call day after as he went missing.
I can’t cope as an only child with no family and I am thinking I probably need permanent care for him.
He has also been classed as ‘terminal’ from the hospital as he has pre-cancerous cells near his pancreas.
Do you think I might be entitled to CHC funding? The cost of care is extortionate and dad is probably classes as self funding as he owns his own home but it doesn’t mean I can afford permanent care without making life changing sacrifices. I just don’t want to seem silly in applying if he has no chance!

I’m reading with great interest your info on CHC. My mum is 88, had a memory test via her GP on our instigation as we feel she has Alzheimer’s which is progressing rapidly. She lives in her own home and because I became homeless myself a year ago, I live with her. I am 64. If she needs to go into a home soon, is it correct that because it is also my home, that it cannot be sold to pay for care fees whilst I live there? Would it be a case of ‘deferred payment’, in other words, if I were to leave that house, THEN the fees owed would have to be paid?

Generally speaking, if it is your home, Diana, you should be able to stay there. Also, you are over 60. if you did leave, though, and there house was then empty, that could be a different matter. AgeUK have some useful information on their website about this.

My 86 year old Dad was granted CHC whilst in hospital. He has Vascular dementia, is PEG fed, diabetes and has had several TIA’s.
He went into a nursing home in October where he is being looked after very well. A recent assessment for CHC has deemed he is now no longer entitled. We are thinking of appealing this decision because although he has settled in quite well he is still prone to flair ups and mood swings.
The CHC was completed whilst he was in hospital, the staff there filled it all in so we did not see what was written down at all. Are we now entitled to see this form if it would help with an appeal?

About 9 months ago my grandfather had a bad fall and ended up in hospital . For the next few months he started to deteriorate. He lost the use of his legs, very limited mobility and prone to falling but tried to walk and would end up having to go back into hospital. Each time the hospital would discharge him to a home whilst care was sorted out by the social services. After the first fall home care was arranged for carers to attend four times a day. At this point we were told to fill in the financial assessment. Also the social services stated that he should not be in his house on his own therefore my grandmother could not go out when she wanted. When he was in hospital he had assessments but when we have asked for results they have failed to inform us. They failed to tell us that he was on medication when we enquired. After the last time he went in to hospital they said that he needed a night carer for incontinence but the social service agency could not provide this as he became aggressive with the careers, so the agency refused to take him back on, other agencies could not provide this service so they said that he could not go home and would need to be placed into a residential home. This was just before Christmas. Since then we have been sent a bill from homes he went to after hospital discharges. Is this something that we should be billed for? The social services have never informed us of NHS continuing healthcare. I was wondering if we should have been made aware of this when he was put in permanent residential care? He is also starting to forget who people are and I do not believe he has had the correct assessments.

My father is being assessed for Continuing Healthcare so I’m going to have a look at your book, however a quick question I have is if his is eligible can we have a say in what home he goes into or will the NHS choose it?

Sorry for the late reply, Maggie. You have choice. If there’s a care home you like, find out whether they have – or have ever had – residents funded via Continuing Healthcare (CHC). If they have, the NHS can’t argue that it’s not suitable.

In 2008 the council and district nurse said my late father would not qualify. This was before they had even seen him.
I have been appealing ever since. A ten year retrospective review has just been completed, does not qualify. The matter is however under appeal with NHS England (because while the PCG manager was off long term sick, and thus his case was not heard, my father passed). I am awaiting that appeal date. I have been in the retrospective process since June 2014, a month after he passed. It is my experience that councils and the NHS will try every trick in the book. I happen to have a video of my father from 2009, which NHS England considered would be very useful with the retrospective process but which the last manager decision maker refused to allow as “evidence” at his *new* retrospective review. I have also been in contact with the legal firm recommended by Nicola Mackintosh who in 1999 represented Pam Coughlan.

My Mother-in-law has an undiagnosed progressive neurological condition. She currently part owns her own flat in an extra care facility, and has regular carers that are funded through NHS continuing healthcare. Her needs are increasing and I think the current company providing care are struggling to cope. We are reluctant to move her from her flat as it has been heavily modified and is close to a lot of her family.
Ideally, we think the best care for her would be provided by a personal assistant who is with her during waking hours, who can then coordinate her complex care needs with other carers.
We are worried that due to the problems with her current care company, she will be forced into a home, none of which we have viewed so far will be able to cater for her very complex needs. Is getting personal assistant type care in her own home feasible?

James – It sounds as though your mother-in-law needs live-in care. From experience I know that the NHS will often insist on putting in place their own carer when a person is funded through Continuing Healthcare. This may not always be ideal, though.

My father had Advanced Alzheimers and then went on to get prostate and bone cancer. He originally went into a care home for 6 weeks to give my step mum a break but sadly she couldn’t’t cope and he never went back. Originally he had a local authority Older Adult Needs and Outcomes assessment done by a case worker where he was deemed Eligibility Band:Critical Risk, Eligibility Need:Health and Safety and Eligibilty Code: AC2 Significant Health Problems have developed or will develop. His Annual and Weekly Budget was also noted on the form. He then had to pay for his care from July 2010. We never knew any different until one day another daughter visiting her father told me of the Continuing Care package. My father’s health had deteriorated so much by then that all we managed to do was get him fast tracked so he got the funding for the last 6 weeks of his life.Sadly he died 24/8/2012. We are currently going through a review to see if we qualify for retrospective funding. I wonder if the fact that my late father was means tested at the start and never assessed for NHS continuing care until end of life will have any bearing?

Hi Caroline. Yes, your father should most definitely have been assessed when he first went into the care home and before any questions were asked about his money and before he was means tested. The health and social care authorities have failed in their duty to carry out the proper assessments and you may well have a positive retrospective claim. The local authority could have been in an illegal position before your father died, as they effectively took responsibility for care that was probably behind their legal remit. http://caretobedifferent.co.uk/nhs-continuing-healthcare-should-social-workers-be-involved/

I have a 33 year old daughter who is fully funded under the NHS Continuing Healthcare. I work full time Mon to Friday and while I am at work, my daughter attends a day centre for people with profound disabilities. When she was funded by the council, she had a financial assessment and the result was £00.00 contribution to her care package. I provide on going am and pm personal care alone with hoist and do the overnight support due to uncontrolled epilepsy (happy to do this). I get usually one week respite when I go away with other local carers for a break and NHS funds 24 hour support at home. The rest of the respite I use in hours at weekends to do shopping and other tasks.
Recently day services contacted with invoices saying that NHS will not pay for food and drinks while my daughter is at the centre because it is not part of the care (Speech and Language and Dietician provides weekly monitoring, draws up the diet and trains the staff and I). They want my daughter to fund her own lunch and drinks while at the centre. I have talked to other families and CHC Coordinator in other areas and they confirmed that day care is funded like other services (nursing or residential) with one unit cost and not separated into care, food and drinks. Other families outside my CCG are not paying this so why should she. The answer from her CHC Nurse is that she has benefit to fund such. Unfortunately the family already funds a lot of her costs because her funds go to pay other disability costs like better quality pads for night time and travel since our CCG changed to poor quality pads, daily laundry(heavy sleep system beddings , heavy wheelchair covers and slings, special meals liquidised as prescribed, insurance on replacement of liquidisers, oral care products, antiseptic, bed and chair mats and heating (these are not funded by NHS although I am doing nursing care at home). Has this come up in the past because if right, it should be unified in all areas?

Clementina – I agree that it doesn’t seem right that the NHS is not paying for food and drink. NHS Continuing Healthcare provision should be the same regardless of where you are. There are national guidelines, national eligibility criteria and national processes to follow.

My father who is 89 years old has been in a care home for over 5 years since my mother died (she was his carer). He suffers from schizophrenia, dementia and heart problems. His mobility is extremely poor and he is unable to care for himself. He has been self funding during his time in the care home. His savings are now running out and we will need to sell his house to pay his care home fees. We have been told he is not entitled to claim any financial help with the cost of his care. Would he be entitled to NHS continuing health care or any other financial help? I would appreciate any advice please.

Sue – as with Gill above, you need to get your father assessed for NHS Continuing Healthcare as soon as possible. That’s the only way to know whether he would qualify. No one can tell you he won’t qualify without the assessment process having been done. Read our FAQs, too: http://caretobedifferent.co.uk/nhs-continuing-healthcare-faqs/

My mum is 88 and in a carehome she as Parkinsons disease and I think dementia. She has no long term or short term memory, is double incontinent and unable to walk. She has to be hoisted and all her personal needs have to be done for her including feeding. She is self funding and nearly all her money gone. Two people have mentioned continuing healthcare to me now and wonder if she would qualify. I have joint power of attorney with my sister but sadley she died three days ago. Some advice on how to start would be gratefully received.

Mother has dementia with no memory at all. She is 91 and has been put into a care home very quickly for her own safety on xmas eve. This is all new to us and tomorrow they are going to do a financial assessment on her with us. She has all the usual complications with Dementia and memory loss. I am sure I don’t need to do a long list. She has become incontinent and lost all her personal hygiene knowledge and suchlike. We are scared about all the costs. She is under the personal savings limit but does have her own bungalow. Would you please try and help us and explain what you think we should have to pay. The social services man that saw her the day before she went in taken into the care home and talked about mental health??? Please can you help I don’t have time to get your book let alone read it the speed things have happened.

Thank you for your advice and the wealth of information on your website. Today I have had the news that my Dad has got the funding and is moving into a specialised Dementia unit with one to one dedicated support. It took me exactly two weeks from doing the initial checklist to get the result I wanted – and despite being told he probably wouldn’t get it as the assessor would say the decline is due to the different environment (he originally went into the home for a two week respite stay but this was extended) – I persevered. Dad’s social worker and psychiatric nurse were absolutely fantastic and worked incredibly hard with me and for my Dad as were the care home in collating and recording every scrap of evidence we needed to secure the funding. I could not fault them at all and it sounds like I have been extremely lucky in that respect. The DST lasted for three hours and although I expected an assessor to be present, they were not there, apparently the bulk of the work is now done by other professionals who have to collate and prepare the application. The meeting consisted of myself, the deputy manager of the care home, the social worker and the psychiatric nurse, all of them worked in their own time to make sure the application was processed quickly. The meeting took place on a Wednesday, the paperwork delivered by hand on the Friday and by the following Monday (today) I was told we had been successful. I do not hold an LPA for my Dad and wonder if that may be a problem in the future if they decide to take it away. However, Dad is not going to recover from his vascular dementia, rather the opposite. I have learnt so much from your website and the CHC stories and feel appalled by some of the experiences recounted. While waiting for the funding my Dad did not have any one to one support for three nights, three nights of wandering the corridors, not sleeping in a bed and falling over. Then he had 10 nights of one to one support for 12 hours overnight resulting in him actually sleeping for short periods in his bed by day 6; eventually the Local Authority agreed to provide 24 hour one to one support for his remaining 5 days. By day 14 we were in a state of limbo, the Local Authority had not approved 24 hour one to one support, the care home wouldn’t keep him without it, he couldn’t go home as the care package at home had been cancelled and he couldn’t be moved to a place who could meet his needs as we didn’t know if the funding application would be successful. In desperation I called my local MP whose secretary was appalled at the situation but had never heard of CHC funding! Finally, at the eleventh hour the LA approved the 24 hour one to one care he so desperately needed while waiting for a decision on the funding. The last 18 days have probably been the most stressful I have ever experienced and I’m at a loss to understand why families have to suffer so much stress and anguish at such a difficult time in their lives. I wish every single family the best of luck and I hope you manage to get as much support as I did, but sadly it seems this is not going to be the case. I am preparing a second letter to my local MP to make him aware of the difficulties faced in securing the funding and intend to pursue it as far as I possibly can.

I’m so pleased you were able to secure the funding in such a short time, Janet. Well done for persevering, especially after being told that your dad ‘wouldn’t get it’. That’s such a common statement – and it usually has no basis because no assessment has at that point been done! It’s always good to hear when things have gone well and when the professionals involved have followed the guidelines and gathered the correct evidence. Your dad’s actual care provision prior to that sounds chaotic and, no doubt, distressing. Your sentiments about the stress that families have to go through at these times would, I’m sure, be echoed by many thousands of families across the country and, as you say, many people in public office have never heard of Continuing Healthcare. Thank you for your kind feedback on the Care To Be Different website. I’m glad it’s helpful. You may find that not having an LPA for your dad could potentially be a problem – and it may be worth applying for a Deputyship order.

Hi Angela, no she doesn’t have power of attorney. She is down as next of kin and as her carer. My niece lives ten minutes away and we live about 2hrs away. My husband runs his own business and often works unsociable hours. I don’t drive so sometimes it is hard for us to visit. Mum was worried about money she had in her purse and a safe and gave us permission to take it home with us. We are now accused of theft, which is daft as my husband is the executor of mums Will. I have been told that i am legally her next of kin. If i can get mum to agree, can i get her moved near to me once she has a care package in place? My husband has had enough and just wants them all including mum to just get on with it. I can’t just walk away…

My 90 year old mother has been living in a residential home which she was moved to by my niece to have her near my niece without consulting the rest of the family. My niece is down as her carer. Her health is really bad and she can no longer do anything for herself. Her flat is filthy and she hasn’t been washed for ages, she had been bed ridden for nearly for weeks. My niece has been coming in and giving her milk and water and then leaving, her bedding has been changed once in nine months. She was admitted to hospital and is now in a rehabilitation ward. They were going to discharge her and send her home but i told them she can’t look after herself. The residential home (mum has a flat, council run) The staff unfortunately think my niece is wonerful as she comes in every day. My niece is also taking money .. in large sums from my mum. Am at my wits end to know what to do.

That sounds really distressing, Christine. Does your niece hold power of attorney? If she does, this could be a matter for the Court of Protection, as she may be abusing that power. If she doesn’t have power of attorney, she has no right to make decisions on behalf of your mum – and the care authorities should not be dealing with her.

My mother was recently in hospital with a chest infection & cellulitis. She has got COPD, under active thyroid, type 2 diabetes & MS. She is unable to stand. We have care three times a day. In May she was diagnosed with lung cancer but no biopsy was done. She is 90 years old and as she had no symptoms it was decided to leave well alone. She is now terrified to be alone at night. I have stayed with her for seven nights as she has been having panic attacks. She was released from hospital on the understanding that a palliative care team would be set up. I’ve been told that she does not qualify for night care as she is not at risk from falling or wandering. What can I do?

My Dad has suffered vascular dementia for over 5 years and my Mom has cared for him. They are 87 and 86 respectively. We managed to get day services and care in the home for him just over 12 months ago. As his condition worsened and Mom became more tired he went into a EMI nursing unit a couple of days ago for two weeks respite with a view to permanency. On the second night I had a call to say he’d had a fall and had been pacing all night. The night nurse told me his room was unacceptable as it’s too far from the nurses and is in an isolated part of the unit, that he is the most vulnerable patient they have and that he desperately needs one to one care. She tried to do this as part of her shift but clearly having other patients to see to as well this led to his fall. The home are trying to get one to one help from an agency for the two weeks he is in the unit, however, I know this cannot continue for longer than that. How likely is it that we will be able to get CHC for him? The staff are trying hard to document as much evidence as possible in order for this to happen but I’m worried about what happens in the meantime.

My 92 year old mum normally lives with me, but she broke her leg in two places last week and has been in hospital for 8 days. When I spoke to the discharge officer today, she told me that mum would have to go into RESPITE care for around 4 weeks until she is able to weight bear, and then into INTERMEDIATE care for rehabilitation. She has said that mum will have to pay the care home fees for the respite period, but this doesn’t seem right to me, because she said herself that mum has to go there because she has medical needs. Nobody mentioned anything about NHS continuing healthcare – they just wanted to know how much money she has! She was very keen to stress the difference between respite and intermediate care, so any advice you could give me would be most welcome.

My husband has just been awarded continuing CHC but I’ve been told he still needs to continue his standing order to the care home. They say the council top up will discontinue but his contribution has still to be paid.
This is £1,196.38/ month.
I don’t understand why as the CHC said he would be refunded from the date the assessment was agreed at panel.
The home say he still has to pay.

Your husband’s care should be covered in full by CHC funding, Margaret. His payments to the care home should cease with immediate effect and CHC payments backdated to day 29 after the original Checklist (not the actual decision). He should receive a refund of any fees he paid after this date, and the care home should not ask him for any more. CHC is payable from day 29 after the Checklist date regardless of how long it takes the NHS to actually reach their decision.

CHC cannot be topped up – indeed, it would be illegal for the NHS to ask for top ups for NHS care; only local authority care can be topped up. All your mother’s assessed care needs should be covered by the CHC funding – and if the care needs have increased, CHC should cover these too.

My father was sectioned under the mental health act earlier this year due to the continued decline in his dementia/alzhiemers. After the assessment period it was deemed that he more than met the criteria for CHC and we were given a list of homes available. We picked the home most suitable which was also recommended by the hospital staff as being the best for dad’s needs, dad moved in April. In May we were asked to attend a review by CHC. They deemed that he no longer required CHC funding as he appeared to have settled down (dispite there still being documented evidence of violent outburst) we were told the fees would be paid for by Social Services. Although we disagreed with their report, we were told that it was just a case of which pot the money came from and so we proceeded to get all paperwork to them for dad whilst having to then sort mum out mums financial details to get her Pension Credits, as they are now taking all of dads pension and work pension to pay towards his care. We have just been hit with another bomb shell to say that Social Services will only pay a certain amount of the fees as the care home is a specialist dementia home and more expensive than others and asked if we (the family) could pay the difference in cost for the home. My mother has move from a rented 3 bedroom house (family home for over 50 years) to a 2 bedroom so that she can afford the rent as the County Council pay an allowance based on occupancy. She is 82 and the stress is unbearable. What can we do? Dad is still prone to violent outbursts, is doubly incontinent and has to be fed and monitored 24/7. We feel this should fall under CHC, can you offer any suggestions please.

My husband is being nursed at home with Continuing Healthcare under a local hospice for end stage heart failure. He is normally looked after by me with the aid of carers and the district nurses. He recently spent a week in a local nursing home for respite care. We chose the nursing home from a list given to us by the Hospice. He had a standard room and the cost for the 7 nights was £1200, which is pretty much the norm for all the care homes on the list in our area. We chose it because it offers what he needed in terms of nursing care and was relatively easy for me to get to. We were told we would have to pay top up fees of £500, which we did. I now question whether we should have paid this top up fee but am confused by the legislation regarding when top up fees should be paid by someone having 100% funding from the NHS. Can anyone help?

Top up fees apply to local authority care (social care) only. This is different to Continuing Healthcare. If your husband receives Continuing Healthcare, this funding should cover ALL assessed care needs, i.e. everything he requires for all his care needs. For more on top up fees: http://caretobedifferent.co.uk/care-home-top-up-fees/ Continuing Healthcare cannot be topped up. It is up to the care home to complain to the NHS if the NHS has not paid them enough.

I have been awarded Continuing Healthcare (CHC) but I’ve been told that in my area the CCG have devolved the process of writing the care plan to the local authority social services. The plan does not meet my complex needs and social care say CHC does not pay for mileage for carers to do my shopping or for mileage or accessible taxi transport to enable me to go out. Also recently they refused to fund a carer to stay with me overnight for 2 nights to enable my husband to visit his family. They wanted instead to put me in care home. Can they do this?

My mums recently been diagnosed with MND, in hospital after a bad fall and now can’t walk, the doctors told me yesterday that they’re looking to put her in a care home as she needs full time care due to falling issues. Now my mum’s totally against this and would like to stay in her own house if possible, but nurses are telling me that there’s no way she’d get 24hr care as hardly anyone gets it. How would I go about trying to see if this is possible?

My mum has now been awarded CHC, backdated to February, 2016. She is 95 late stage dementia, bedbound and immobile, and doesn’t speak. EVERYTHING has to be done for her. We would prefer to keep her in her own home (she owns her flat within an extra care complex with 24/7 LA carers on premises) and wonder how much care might be available to her, and if 24 hour care could be available and by whom. We have a meeting with the NHS social worker in 10 days and want to be prepared and know what we can ask for and expect. The current care provided by LA doesn’t meet her needs, and we have been complaining about this for over a year, making a formal complaint to Council 7 months ago, without a solution & therefore taking it to the LGO 4 months ago. The investigation is in process. Any comments/help/advice would be greatly appreciated.
Mary

My mother was placed in a care home by the Social Services, and as such she has to pay all of her pension to stay there. I am, and was not aware of the Hospital funding No PaY Scheme. Is it possible to transfer to it? Mother nor I were given a choice of Home. She has Dementia, and I was put onto a “vulnerable” list, and left there. I flounder along surrounded by brick walls, and now have no say in her care at all.

Jacqueline – Remember that it doesn’t matter whether or not your mother was placed in the care home by Social Services. That does not affect her entitlement to Continuing Healthcare (CHC). The only thing that matters when looking at a person’s eligibility for CHC is their health and care needs. Their money, the type of home, who placed them there, etc – these are all irrelevant. If you mean Continuing Healthcare when you say ‘hospital funding no pay scheme’, then yes, your mother should be assessed for this to determine whether or not she does have to pay for her care.

My mother has just been assessed as being eligible for CHC. However, i was told the health authority gives a set amount depending if a person has one or two severes or so many highs. I have been told it might be around £500 but as she needs nursing dementia I have not neen able to find anywhere under £850 and as she neefs 1:1 care most of the time it could be in excess of £2000 a week the social worker told me my mum can use her pension to top up and if or when the CHC will be withdrawn in three months time I will have to pay the top up. Surely if she needs high care the CHC should be covering the full amount? I had not heard of different rates being paid out for diffetent scores regardless of what nursing homes are charging to meet the assessed need. Can you help? Thanks.

Hi Jo – there’s no ‘grading’ of CHC. It must instead cover all assessed care needs, whatever they are. I’ve heard of cases before where assessors try to persuade a family that CHC payments are linked to the level of scores in the DST – and it’s not true. In addition, the social worker doesn’t know what he/she is talking about – CHC cannot be topped up; it’s only local authority funding that can be topped up. A care home should not ask you for CHC top ups either.

Jane Taylor3 years ago

My husband aged only 57 has picks disease, a rare Dementia and was put in a care home in February. I have just had CHC decision saying they’ll only pay 50% despite having more than two severes. Fees are £1k a week and it’s not 5* but he is potentially aggressive and incontinent sometimes. I have children still at home and now unemployed as I had to give my job up to care for him. How can they expect me to find that sort of money? I’m living off beleaguered savings as his pension only just covers bills. Everyone says surely you won’t have to pay but CHC and social services seem to think I do!!! What can I do?

My dad has just moved into a nursing home with a terminal illness, he is receiving nhs continuing healthcare funding, but we have been told the local authority puts a cap on the amount they pay, is this correct as my understanding was 100% of the nursing fees would be paid.

Local Authority does not, (should not be paying), pay for any care when NHS CHC is being paid. There is a scenario that I dispute the validity of and that is the 50/50 split of care needs that enables the council to recharge for much of the money they pay out, whilst the NHS cannot do that. Perhaps that is what is occurring. It is usual for the NHS to have contracted rates for nursing homes. Perhaps that is what is meant. If so then choosing the most expensive might be a problem There again, if a resident is self paying and then the NHS takes over, there are cases that prevented the NHS moving the patients to the cheaper homes and caused them to pay for the expensive ones.

The answer to this is yes. PIP is to do with your disability and how it affects your everyday living. NHS Continuing Healthcare is to do with the NHS continuing to meet your healthcare costs wherever you might be.

My elderly aunt was taken ill some 4 years ago and went to live with my mum and dad, unfortunately after 8 months my dad was diagnosed terminally ill and my mother could not cope with both dad, and his sister (my aunt) she was put into residential care and was quite comfortable but after a year she had a few strokes and kept falling etc. she has many problems, Parkinsons, arthritic joints all over her body and Lewy bodies etc. she is double incontinent, auntie was taken into hospital and stayed for a long time. The home assessed her and said they could not take her back as she could not weight bear therefore needing nursing care.
We looked everywhere to find her a placement, as did the hospital and everyday they would state that they needed her bed and she needs to be moved. We were very concerned and it made my dad feel so bad that he could not do more for his sister. I had a fall time job, although I have been a matron in a care home for many years and dad ask if I could take some time off to care for auntie until we could get her sorted. I had a spare room. My employers gave me leave to help both my auntie and give my mum support with dad. This was over a year ago and she is still living with me, and I have given up my job. Auntie needs 24 hour care, I have had to have a hoist fitted and she needs two carers to lift her morning and night. Auntie has everything done for her, she just sits in a chair all day and watches tv, although she is very deaf and cannot speak. We have just applied for CHC although going from your page this should have been done a long time ago, possible while she was still in hospital. My dad held POA for her for some 12 years, although it was never used but since his illness both me and my sister now hold joint POA.
When my dad ask me to look after auntie he made it clear that I would be a paid carer for which my aunt pays me privately and I have kept a record of this in her and my bank statements. My question is if she receives CHC will she still pay me or would I be able to receive payment for her care from the CHC. and how would I go about this. Many thanks

I have a Decision Support Tool meeting for my mum who is in a nursing EMI home in 2 weeks. Just want to get clued up. She has dementia and no classic challenging behaviours but she has postural hypotension, needs 2 to walk with her, is approx 5 stone and is a high falls risk. She keeps forgetting she can’t walk on her own and tries to get out of her chair on an unpredictable basis each day. Has a seat sensor and is on 15 min observation charts by the staff. Would this behaviour warrant a score in the behaviour domain in addition to the mobility domain? Also what is passive non aggressive behaviour that is mentioned in the behaviour domain narrative? Thanks.

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Step-by-step e-book

Many people find this e-book a cost-effective starting point: How To Get The NHS To Pay For Care.

It takes you step-by-step through the whole NHS Continuing Healthcare process, right from the start, including how to approach the NHS, what should (and shouldn’t) happen, the pitfalls to avoid, what to do and say before, during and after an assessment, what’s right and what’s not, how to challenge decisions, how to pull apart the NHS’s assessment notes, etc.

It gives you a firm understanding of the process and lots of useful and practical information.

What is Care To Be Different?

Care To Be Different is a trading name of Continuing Care Solutions Ltd, Registered no. 09939723.

All content on the Care To Be Different website is copyright Continuing Care Solutions Ltd.

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